tag:blogger.com,1999:blog-65397693650002020932024-03-13T09:22:39.399-04:00FTD/Dementia Support BlogThis is a support blog for people that have been diagnosed with early stage FTD/dementia. This blog is dedicated to helping people help themselves as well as increase awareness for caregivers, friends, and the medical community. It will include finding groups, medical care, public assistance, having fun again, making new friends, dealing with old friends, family, depression, and isolation.
Dementia is a lifestyle change. You can live a happy, productive life with dementia.Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.comBlogger173125tag:blogger.com,1999:blog-6539769365000202093.post-6829386933816685782016-02-14T16:28:00.000-05:002017-02-25T15:03:55.242-05:00FTD on HBO Feb. 19th<div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: "times" , "times new roman" , serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a safe, positive environment and realize there not alone. FTD is not the end of life. Life goes on and members of the FTD Patient Support Group learn coping skills to help manage life with FTD. </i></span></b><b><span style="color: #0c343d; font-family: "times" , "times new roman" , serif; font-size: large;"><i>The group is also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: "times" , "times new roman" , serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="font-family: "verdana" , sans-serif;">The award winning HBO series "Vice" will be Premiering "Right to Die" on February 19th at 9pm and then be show at various times after. The 30 minute minute show will predominately feature several FTD'ers from the FTD Patient Support Group, including myself. This show will be shown around the world and should help our fight for FTD awareness.</span></b><br />
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<span style="color: blue; font-size: large;"><b><span id="goog_354105231"></span><span id="goog_354105232"></span><a href="https://www.youtube.com/watch?v=Uq0OdePoI9c" target="_blank">HBO Vice Preview: (30 sec) "Right to Die" </a></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>7 of us FTD'ers discussed death with dignity and the hot political topic of right to die. We openly discussed our feelings and plans and I'm so happy the members of the FTD Patient Support Group were able to participate.</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>The FTD Patient Group has 120+ members from 20+ countries and the group is one big family. Besides being a safe, comfortable place for those with FTD to go, many members from the group have also been or became strong community FTD advocates and participate in speaking engagements etc. with the AFTD Conferences, Alzheimers Assoc....</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>I have been honored and humbled to have created, grown and facilitate the "FTD Patient Support Group" and the sister group, "Ask the FTD'er?" support group for caregivers and medical researchers to ask questions of those with FTD. Both groups have upwards of 300+ people. I've had help from administrators I've added on since I created the groups in late 2011.</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>Since 2011, I've read and left comments for just about every post and thread written. Since the group is online and international, it runs 24hrs a day and there's always activity. Last year I stepped down because I could no longer could keep up, nor understand what I was reading. I was talked into staying on, but progression of FTD as well as persistent heart problems had me recently step down.</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>Whereas I was firmly diagnosed with FTD in 2011, I also wound up with cancer and a heart attack with 3 Stents placed all within two years. I live alone and manage my own care, which is difficult but doable and spend most of my alone. FTD isn't really one of those friend friendly diseases. Have moved 3 times in 3 years because of FTD judgment. One of my plethora of symptoms is never being able to figure out what to eat or what I can afford, so I found myself hungry every night and ordering pizza 5 nights a weeks or so. Not the smartest thing for someone with heart disease to do, but that's the way my FTD world rocks. I don't keep food in the refrigerator because I was getting sick eating food that was spoiled, ignoring it's state because I was hungry.</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana" , sans-serif;">Started getting chest pains again several months ago. Last time I had a heart attack, I didn't find out till months after it happened. I know my cognitive skills have been declining so which is the lessor of two evils, slow FTD decline or quick heart attack. Plus going to a cardiologist is extra monies for co-pays and testing which I can't afford. Either way it getting impossible to continue leading the FTD Support Group and it was time to pass the gauntlet as to be sure of the groups continuance. Teresa Webb was the most capable person I know and she agreed to take over the group. I strongly suggested she put Sheryl Whitman in charge of the "Ask the FTD'er?" group, which I was happy to see she did. I also passed to her the contract and details for the restaurant I booked for the Annual Pre-AFTD Dinner for FTD'ers at Coopers Irish Pub in Minneapolis. Traveling has just become to difficult for me, plus I just can't afford any extra's in life. Last year I booked a plane ticket to the AFTD conference. Wound up driving, but at least I had foresight to </span><span style="font-family: "verdana" , sans-serif;">taking</span><span style="font-family: "verdana" , sans-serif;"> out insurance for the plane ticket. Of course I couldn't do the paperwork so never got a refund. I've been lucky to have been going to the AFTD conferences since they've allowed those living with FTD to attend. Last year we 32 attend the FTD'er pre-conference dinner I've hosted each year for FTD'ers to celebrate life. I'm very happy the party will go on without me.</span></b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b>My retroeconomic situation has my savings down to a critical level, so I've decided to write a book. I've a pretty amazing story, so maybe if I can write and finish it, life will be a tad bit easier. I've 157 pages done.</b></span><br />
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<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana" , sans-serif;">Meanwhile I've severe dental issues so I've been going to Mexico for dental work. That or no front teeth. It's 75% cheaper and just can't afford it in the US. It's a 3 hr drive and last month on the way back I decided to have one of those 3 hr energy drinks. Bad move. I went from chest pains every day to one huge pain. Honestly thought I was going to die of a heart attack. Being on the interstate in the middle of the desert, I saw a road sign that alluding to "The Painted Desert". Okay, I'm going to die, it might as well be somewhere beautiful with a big FTD death grin on my face. Drove the 11 miles and arrived at what looked like nothing special. Took a couple of selfies and sent them to a bunch of people while waiting too die. Many bounced back. The pain then started subsiding and I received a text alluding to me being an idiot and I was hundreds of miles from the "Painted Desert". I was at "Painted Rock Pyrography". If I would've gone to meet my maker, he or she'd be laughing at what fool I was for dying and thinking I was somewhere I wasn't. </span><span style="font-family: "verdana" , sans-serif;">Meanwhile I had two friends who I've know since I was 5 years old die. One was like a brother to me. They both died of heart attacks. Decided it's not time to check out and made an appt. to see a cardiologist. First time seeing one since I lived in NYC years ago.</span></b></span></span><br />
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<b><span style="font-family: "verdana" , sans-serif; font-size: small;"><span style="font-family: "verdana" , sans-serif;">Did see a cardiologist, had testing done at the hospital and was just contacted before the weekend and was told testing found something "abnormal" with my heart. Last time I heard "abnormal" it was my describing my brain from PET scan results. Dr. Kaufman wants to see me him immediately, so they've an appt. made tomorrow Monday the 15th. I'm lucky that Rita McBride, my </span><span style="font-family: "verdana" , sans-serif;">friend</span><span style="font-family: "verdana" , sans-serif;"> from ALFA with be going with me to help me. Hopefully I'll remain in the land of the living to see my kids, finish my book and watch the HBO special on the 19th. Lol</span></span></b></div>
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<span style="color: purple;"><b><span style="font-family: "verdana" , sans-serif; font-size: large;">I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver and manage my own care. I'm in the minus everything month. Social Security Disability only goes so far and there was no cost of living increase this year. For those that want to help </span></b><span style="font-family: "verdana" , sans-serif; font-size: large;"><b>there is a <span style="background-color: yellow;">yellow</span> donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com4tag:blogger.com,1999:blog-6539769365000202093.post-78412273299591301132015-10-11T23:04:00.001-04:002015-10-11T23:43:19.956-04:00FTD and Voices of FTD<div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Well, moving again. Been in Arizona 2 years and this is my third move. No matter what can't do this again. I'm finished. My life is a cacophony of bad judgement. Just never really know what I'm doing. My thinking and behavior is always off. Through out all my picture books and family pics when I moved from NYC. Through out the family old reel films......... </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">This isn't why I'm writing now. I'm writing about Kiwi Black Shoe Polish. I just threw out my tin of shoe polish. This is huge, this is defeat. Been about 10 years now since I worked. Really don't have a clue to years exactly. I loved working and had the best job in the world. Flying 120 flights a year everywhere, 200+ nights in hotels. Managing sales forces and companies. Yes, it took it's toll on family, but this was my career for 18 years and I loved it. Every night, I would pull out my tin of Kiwi shoe polish and put a heavy layer on my Allen Edmonds shoes. Every night. Loved the smell of shoe polish at night. "It smelled like Victory." (lol) In the morning I would use the hotel shoe polishing mitt and polished my shoes to a high shine. Every morning. Boom, then off to intense an schedule. I loved it. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Ten years of losing me. Misdiagnosis and maltreatment from the medical community. Pills, electric shocks, surgical experimental implants, suicide attempt with 4 days in a coma, 7 weeks in a psych. ward leading to an FTD diagnosis. FTD, the ultimate mind fuck and killer of innocents and there families. I took my work ethic and found a new job of FTD advocacy and awareness. Think I've done some good and my kids are now proud of me instead of thinking I'm just a nut. Moved from Seattle to NYC to my 3rd move in two years in Arizona. Every move I run into the tin of Kiwi black shoe polish and I would pack it. Why, because I'll be going back to work. I feel fine a good deal of the time. The dream that was, is no more. I threw it flippantly in the garbage this morning without a second thought. Then the smell haunted me all day today. The Howard Glick that was, is gone. Every day I wish for death. I can't even think of how to describe the smorgasbord of symptoms which I and others with FTD go through. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I'm proud of some of some of my FTD advocacy accomplishments. Last week was FTD Awareness Week. A special kickoff evening was at the new WTC in NYC. How I yearned to be at that evening and be part of the FTD family. How I yearned to be back in NYC with my life long friends who put up with me. Here in Arizona, I'm a horse with no name. Actually horses are treated decently. Broken leg and there put out of there misery. If I was a horse I'd be Ikea meatballs by now. Packing was tough. Really have no one in Arizona, but no where else to go. FTD isn't a people friendly disease. People don't want to be around us and we don't want to be around them. The only people we get along with are others with FTD. We "get" each other. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><u><i>AFTD placed this ad in the Sunday NY Times:</i></u></span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">I looked at the guy on the bench and started crying. Realized it was me. Not just in being so alone, but in losing so much of my humanity. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">AFTD put together a short video for the WTC evening of FTD'ers and there accomplishments. I'm honored to know these people from the FTD Patient Support Group I created. These are the finest people in the world who fight not only to live, but to help others. I saw the picture of myself with my great FTD'er friend Gary Walters. At first I was upset. There was nothing about anything I've done with FTD advocacy. The selfish Howard popped up. The caption discussed how Gary and I met online, got close and have been friends ever since. Gary is from BC, Canada so we see each other at AFTD conferences and other occasions. In fact, I just realized the only time I've been away from Arizona in the last 1-2 years was when Gary's family invited me to outings or the AFTD conference.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Gary's an incredible man who used to own car dealerships. Now, sentenced with FTD he started advocacy for Native Indians in Canada. He made such a difference in lives he was awarded an Eagle Feather, the highest honor bestowed on someone by the Indian nation. In America, the equivalent would be the Congressional Medal of Honor. I realized how honored I've been to be with my friend Gary in the AFTD video. In fact, most of the FTD'ers in the video know each and have met at the AFTD conference that's held once a year. Many are in contact online and most of us have developed a strong bond. We are all so alone, so lost while we're losing our minds, bodies and humanity. Yet, all are fighting on to make a difference. I miss smelling Kiwi black shoe polish, but I've a different life and path that's taken me to a place I never could've imagined. Yes, us living with FTD that have awareness are a minority with a huge responsibility. This minority has a voice and we speak for all with FTD. From those unaware to those that can no longer communicate. </span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards,, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver. I'm not starving, but am in the minus everything month. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="background-color: yellow;">yellow</span> donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated and will go to medications first:</b></span></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com7tag:blogger.com,1999:blog-6539769365000202093.post-50734932536842654882014-10-14T11:03:00.000-04:002015-04-11T11:02:01.021-04:00Death Plateau<div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="color: blue; font-family: Verdana, sans-serif; font-size: large;">I'm lucky enough to have signed a book deal to help get my FTD story out. Am working with a ghostwriter whose meeting me every week and really has a unique way of having me disclose things I wouldn't or would barely write or discuss on film. It's also helpful to me because I rarely have human contact and just speaking to someone is helpful. He is recording all of our sessions and is making copies of my documents and will be contacting many of the people involved in my life. He has 5 other contracts and I'm lucky enough for him to do "I'm Aware, I'm Unaware" without getting paid up front. A NY Publisher will make sure he gets paid and my children will see future residuals. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Feel like I've leveled off lately. Never really sure with FTD where your at. Last night I had such a bad headache I wanted to put my head in the microwave, but couldn't figure out how to close the door with my head in it. Pain killers knocked me out and here I am, better and chirpy at Starbucks. First time I've been back at Starbucks since my last blog weeks ago. Headaches are one of the unrecognized symptoms of FTD by the medical community. Most FTD'ers get then. Everyone tries something different to treat them and I've never heard of anything that makes them go away. I do have faith that someday, someone will figure out how to close that microwave door.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I used to write how I felt I was taking an FTD hit and then I'd rewire. These days it's adjusting and accepting to the new low plateau. How long will I plateau and have I actually plateaued? I've no idea. FTD marches on. I know I do feel better than weeks or months ago, but I'm definitely in worse shape. But what is bad shape and will FTD progression accelerate or give me a break and plateau. Eight months ago I was thinking of ending my life in October. Why? My psyche was being broken down by both physical and unseen progression. In the physical department, I started having swallowing/choking and balance issues. This on top of an already exhausting list of FTD revolving door symptoms. That led to deep depression and the walls of Babylon came tumbling down. So yes, I was thinking my time has come. Many with FTD want to die with dignity before we become living vegetables.. Don't want to be a burden to our families, friends or whatever we have left after driving everyone crazy for years and years. I know I have an extensive FTD enhanced Fuck Howard Glick club. Don't want to be peg fed, fully continent and left to rot alone in some facility. So the plan was for October. That course led me to decisions made that I now regret and cannot turn back.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">October isn't it and I want to keep living though all of the above holds true. When is the right time and when will it be to late before I'll forget or not care about my death by living. This is a living hell we who have FTD and are aware go through. I don't know when my time is, but it's not now or anytime soon. Not fun living your life this way, but I've a purpose. To make sure whoever is reading this understands the hell that someone with FTD, there family and there friends go through. I do need to find some happiness in my life. Happiness doesn't just come knocking at your door, you've got to fight for it. Have joined a gym and have been doing 6 miles a day. At least that's getting me out and putting me around people, though actual contact with other humans is minimal. Some kind person donated money so I've new sneakers, insoles and socks. Am happy to say my feet are healing. Have sent the person a letter of thanks and I'm thanking her again now. Am also lucky to have a couple others helping me including Joe Becker, the </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>filmmaker. I'm forever appreciative for any and all help I get.</b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><i>Here's my fridge. You can see I'm eating healthy with a diet of grapes and fruit. Bought the grapes on a raincheck at 75 cents a pound. The cashier said I had to many pounds so I told her i'd take out 1 grape at a time till I reached the allowed weight. I grab bags of fruit, who weighs. Also told her she'd be beautiful once her acne cleared and she got out of adolescence. That didn't go over to well.</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">As far as people in my life, will there just aren't. It's nice having web friends. but that's not distant and not real life. Being alone and a prisoner of your own mind with FTD just makes shifts to depression and mood faster with no one to lean on. My mind is like a ping pong ball with focus going back and forth all the time, yet sometimes it's a slow hit up in the air before landing and back to the other side or focus.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">No question that we with FTD that are aware and aren't aware of our behaviors are as hopelessly lost as the caregivers and people that try to help us. Everyone involved in FTD world is lost. We with FTD say, do and write hurtful things. We tear everything apart. Many caregivers and family member see us as showing our true feelings while blurting out, saying or writing hurtful things. I've heard people say FTD is a the ultimate truth serum. Nothing is further from the truth. We go moment to moment and don't lie, just say what we're feeling at the moment and don't hold back and usually go way, way to far. Once we get on an FTD rant and roll, there's no stopping us. Then people think we're mean or can control what we say and we can't. Yet, others think there's absolutely nothing wrong with us. FTD is the ultimate cruel, bad joke. I'm a veteran of all these battles and have lost every time. Think that's the major difference between the suffering of caregivers and those with the disease. We never can rebound or have any life. Those with the disease will keep spiraling till we're dead. How do I get over the hurt I've inflicted on others? Apathy only goes so far. I'm lost in a disheveled mind and know it. I know I'm hopeless to do anything about it. I can no longer explain to anyone, nor do I wish to about my actions. I've come to terms and am at peace with the fact I cannot change how others perceive me and my behaviors. Tired of people making up what they think is logical answers to me and FTD. There is no logic when someone is losing there mind.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Well, did all testing for the swallowing issues, x-ray testing and found out I have reflux, got an expensive prescription a week ago which I'm confused about so still haven't taken it. Now I started speech therapy and she discovered my main swallowing issues are from FTD, not reflux. So now I need new testing, swallow test or Functional Esophagram test and a whole new schedule of therapy etc. The therapist did write out a list of rules or tips. She was very sweet. One of the tips are not to eat 2 hrs before sleep. Well, it'a after 10pm, I haven't eaten since yesterday so I'm about to go out for mexican takeout :-) Nothing in the fridge and slept all day, except for the 8am appt.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Feel like I'm back on the medical merry go round nightmare with constant docs, tests, therapists coming back into view. Of course unlike my takeout food, all this medical care doesn't come with a menu. It's the good old bill after bill till your broke and dead routine. I've seen the movie before. Lost all my savings, investments and gone bankrupt from 6+ years of misdiagnosis. Now I'm back into the dilemma of returning to the medical care system of the United States of FTD or fuck this disease. I'm moving, rent is higher and I'm on the edge financially and really don't know what to do. I've zero debt and been as responsible as I can be. I don't have anywhere to cut back from. Still check my back 10-15 times a day :-) FTD is incurable, untreatable and unstoppable and the medical community has absolutely no morals in taking every penny you have for seen and unseen things.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><i>The medical community is in it's infancy with FTD. Of course they rarely like to admit it and drive most crazy with diagnosis's and re-diagnsoses. Rare to hear the simple words, "I don't know." Most have huge ego's that need to give and answer and we as the starving desperate one's will do anything for hope. I've had enough where I don't have a neurologist or psychiatrist and won't be seeking one. No FDA approved meds, so I won't take anything except for heart etc. Won't be a gunea pig. Don't have the time or money to waste. If you have a cure, I'm first on line. Otherwise don't call me, I'll call you.</i></span></b><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>I'm moving on Saturday. That should be fun. Haven't done a thing, but it looks like I'm going to have help. Whatever happens, happens. </b></span><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">I admit, being alone and facing this just keeps getting harder. Just will keep doing the best I can every day for as long as I can.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver. I'm not starving, but am in the minus everything month. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="background-color: yellow;">yellow</span> donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated and will go to medications first:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<br />Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com9tag:blogger.com,1999:blog-6539769365000202093.post-73332690260149924322014-10-04T16:55:00.002-04:002014-10-04T16:55:23.989-04:00FTD Abuse and Awareness<div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i><br /></i></span></b><span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;">The longest drive I do every 2-3 months is to get my haircut. This morning "MY" handicap spot was taken. How dare they. There car should be towed and compacted. Metered spots everywhere, but I can't figure out the meters anymore. I've 'my' spots in the few places I frequent and don't like to park anywhere else. Unlike Alzheimer's it's not that I forget where I park, it's that I don't pay attention to where I park. Even upon leaving the car and realizing I've this issue, I still cannot keep focused long enough to pay attention to where I park. Hey, I'm aware of his, therefore I park in my spots. Need to have stickers for Howard FTD designated parking. Hey, have wandered aimlessly for 1+ hr of time looking for my tiny green mini before. It's not fun. Yes, was just about to give up on the haircut and go home when I found another Handicap spot. Write now righting this I know my car is around the corner from the popular Interurban Clothing store. Only problem is I know the shops not called Interurban. It's blocks from the Starbucks from which my butt is currently placed. Okaaaaay.....Back to Carlyn's one chair barber shop. Carlyn saw me enter, looked up and said two words, "Urban Outfitters." LOL. </span></b><b><span style="font-family: Verdana, sans-serif;">Have to love FTD Swiss Cheese Memory.</span></b></span><br />
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<b><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;">Joined that $10 a month gym and am making good use of it. Seems like I've these urges to keep moving. Now going twice a day sometimes. I've heard of others with FTD walk/pace, but this one is new to me. Did 8 miles the other day. Not intentionally. Knew I was in a bit of trouble even a day or two before this, but just can't seem to stop. Used to run pre-FTD back in the day when I was whoever I was. Really feel like running on the treadmill, but have some semblance of sanity realizing the dichotomy between balance issues and running and walking. Funny, sitting here at Starbucks, I've an overwhelming urge to be moving. Routine, routine, routine. Gym goes into the slot and Starbucks has become sporadic. Need to get out of the house and try to stay out of my own mind. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Showed the above picture to my group and got also sorts of comments. It's really not bad, I think. I did listen and went to running shop armed with my Amazon app. Need sneakers and socks. Right, maybe after the move. Need to let the dust settle and see what's what. Oh, I'm moving in 2 weeks. Between balance issues and the criminal element where I live, I've felt I've no choice but to move. I'm on the 2nd floor and having issues with the steps. Not horrible issues, but I'm falling :-) Where I live now, if I fall my neighbors will walk over the body and go rob my apartment. Almost tumbled backwards last week, so I guess I'm making the right decision. Am really lucky to have a wonderful woman, Valerie contact me and offer to move me for just about nothing. She's donating her services and having a moving company pack my stuff and move me a mile to my new safer, ground floor apt. I'd like to mention her company, but I don't even know the name of it :-) I'll update. There are some truly wonderful, wonderful people on this planet and I'm so grateful for any help that is offered to me.</span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">Went for a swallow test the other day. X-rays etc of throat, stomach. Don't think my swallowing issues are getting more frequent, but severity is a different story. Actually had a painful choking experience where it went into my lungs and they felt on fire. Coughing, choking and it felt like it came out my nose. Not fun. I wake up sort of choking, drowning. Are we having fun yet? Anyway the tests complete and received a call from my doc. Not used to that. Normally you need to call and chase docs down for test results. I didn't even call......Unfortunately, I can't figure out how to retrieve the message. Oh well, guess I need to be careful not choke to death before I call to get the results on Monday or Tues. Can't put the horse before the cart. </span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">FTD gets worse, plateaus........gets worse, plateaus.....We with the disease never know where we're at. I've taken a huge hit over the last month of so. Went through a really crazy stressful period and haven't recovered. Lot's of fun living and having less of you all time. I never really understand things happening around me. I'm sort of in a bit of a confused state where I look at one thing one way, then look at it totally different minutes later. Then I bounce back and forth. To me there both real. I find myself getting wound up in a heartbeat now. I am really good at living my FTD existence as me. Hey, I'll beat the crap out of 99% of the world when it comes to international politics.</span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">This latest hit has had me scale back and I will not be participating in caregiver groups anymore. That or bare minimum at best or worse. If that makes sense. Left a group last week and received so many communications to return and people wanting me to return. Thank you all for your concern. I get wound up in an instant now. Get angry over seemingly nothing and revolve and dispute in my own mind. Constantly taking the topic or flavor of the day and make it nonsensical in the laundry dryer of my mind. I read one post or thread, follow it or decipher it one way, then shortly after another way. To me it's so clear at the time no matter how screwy it is. It's a good thing I'm losing my mind or I'd really be scared of being F'ed up. Can't follow or keep up. My reading comprehension and cognitive skills are way off now. Having trouble following voice to mouth on TV now. Certain newscasters I can't even watch. Can't keep up. Of course all this translates to me keeping contact at minimal contact with the human race. Have decided to stay away from anyone who is not in the medical field or understands FTD in the way of any decisions or responsibilities to do with me. Anyone out there with FTD knows the constant frustration of well meaning friends and relatives that become incredible harmful and destructive because they just don't "get" FTD and like to pretend they do and know what you need. They get hurt because we're sick and they lash out because in harmful ways. All with FTD who are aware or unaware go through this. We're easy marks having dementia. I even had a sociopath relative pretend to be various people and tried to have me evicted from my apt and thrown out into the street. Also tried cut off all my services including my health insurance by pretending to be my Power of Attorney, months after I revoke and fired him from being my POA. He also got caught forging my name on documents. This with me having FTD and trying to arrange cancer surgery. My sibling kept telling me it was all in my head. lol Luckily I was victimized by someone who was as stupid as he is devious. Later came out he's a criminal and has been arrested multiple times for similar things and graced the newspapers more than once for his demented acts. The New York District Attorney's Office has an open felony investigation with multiple subpoenas having been sent out in relation to what he was doing to me. Tons of hard evidence and witnesses. Obviously it's not all in there heads. Have put up with abuse more than once now. Once intentional and once out of spite, malice and ignorance. As you can tell I'm boiling here thinking of doing a blog on with links to the newspaper articles and my first POA's arrests for pretending on the phone to be a US immigration officer and threatening he would come and deport her out of the country (sound familiar), sexually harassing a woman on and off over a 13 year period and $82k in bad checks. Never mind the 1 /2 years he was actively harassing me. Evidence has popped up he's once again active with me since I've moved to AZ. Could never get all my legal papers back, so he'll play. Obviously couldn't care less about being arrested multiple times or the effect on his own family. Maybe if he starts to feel the heat, he'll go back into his cave. Have FTD ranted enough. Wasn't intending to go this way, but so be it. Think I'll just hit the publish button.</span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver. I'm not starving, but am in the minus everything month. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="background-color: yellow;">yellow</span> donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated and will go to medications first:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com6tag:blogger.com,1999:blog-6539769365000202093.post-56117834718421931942014-09-25T15:34:00.003-04:002014-09-26T03:26:04.809-04:00The Alzheimer's Assoc. and FTD Awareness & PASRS CONFERENCE <div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">The Alzheimer's Assoc. did a cover story about FTD and including me in there quarterly Newsletter. Don't know if anyone out there knows this but I have FTD, which is a rare type of Dementia :-) Dementia is living a life of a diminishing brain and skills. Besides my behavior and physical health declining, I'm struggling with everything. Stop, put away your violin right now. I've a life and I'm continuing to make the most of it no matter what shape I'm in. No matter how far I fall, I'll continue to get up. I have been working for over a week and countless, countless hours to try and publish for you the 20 page or so Alzheimer's Assoc. Newsletter below. Never succeeded. I then took a screen shot and finally wound up somehow converting it to Word, sending it to my I Phone Text, then emailing it to my email and downloading it to IPhoto, Edited and cropped the upper of my computer off the screenshot picture and importing it to the blog page. Have had at least 100+ failures. I'm sitting here laughing and Happy. I got it done. Last year or two years ago this would've taken me 10 seconds. 10 seconds to weeks. People ask me how I blog? Like everything else, it's very, very hard but I'm committed to keep up with my FTD awareness and advocacy campaign till the Fat Lady Sings.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I want to thank the Alzheimers Association for there article on me and helping with FTD awareness. FTD is a younger brother/sister dementia and I deeply appreciate all they do for Alz, FTD and the other dementia's. Met with the lovely people at the Alzheimer's Assoc. office here twice and have had multiple emails. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">My desire, the last thing on Howard Glick's bucket list was to start an FTD Patient Support Group here in the Phoenix area. Start here and expand. I've other's in my FTD Patient Group that would like to do the same around the country. It is needed and no one knows this as much as us FTD'ers who are functioning. I already have 4 FTD'ers interested in being in the Phoenix group and the Alz. Assoc. told me they know of plenty more. They were excited at helping support me with this. They also spoke to me about doing regional speaking engagements on FTD/Dementia. This was months ago and I keep pestering. Yes, I've zero patience. When you have FTD your placed automatically in a zero patience zone. No time for BS. I regularly drive my good friends at AFTD crazy. Surprised they haven't put a hit out on me. Anyway, I'm sure the Alzheimer's Assoc. will get back to me. I have to have patience and remember Alzheimer's Assoc. is the "Memory/Forgetting" dementia :-) I'll keep reminding and pestering. lol</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">This week I was honored to be a guest speaker for the PASRS - Professional Association of Senior Referral Specialists. Connected with many owner/operators of Assisted Living facilities. Thank you Rita McBride for giving me the opportunity to help with FTD awareness. At one point I asked how many in the room of 150+ have heard of FTD. Was pleasantly surprised that more than 3/4 were familiar FTD. I discussed my story, FTD and the major issues of FTD'ers in Assisted Living. I also get pretty emotional while speaking. The road I've traveled and am on is tough and rehashing what is a continuing one way road is tough.My happiest moment was in the end when one woman came up to me that owns an Assisted Living facility and told me she has a gentleman with FTD in her facility and because of my talk, she know understands his behaviors better which will lead to better treatment. Once again I thank PASRS for allowing to share my </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>information with them.</b></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>My speaking engagement was filmed for use with the FTD documentary "Howard's Brain" which will be made by Joseph Becker of Thinkfilm. Joseph Becker has made the FTD, AFTD sponsored documentary, "It is What it is" and his company is known for being the filmmakers of the hit TV series, "West Wing."</b></span><br />
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<span style="font-family: Verdana, sans-serif;"><b><b><a href="http://www.youtube.com/watch?v=Ue3y60AsMCE&feature=youtu.be">"IT IS WHAT IT IS"</a></b></b></span></div>
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<span style="font-family: Verdana, sans-serif;"><b><span style="font-size: x-small;"><i>(Click to see short film)</i></span></b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"> <b><a href="https://www.kickstarter.com/projects/thinkfilm/howards-brain?ref=live">Howard's Brain Kick Trailer (6min)</a></b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;"><b>(click to see )</b></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I love what I'm doing with FTD awareness. If anyone needs me for a speaking engagement, I'm free to travel anywhere, anytime.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">There's a lot more happening in my life. With my health, with me moving in a few weeks, with a group of wonderful healthcare related woman, which I call "Howard's Angels." These wonderful experienced woman want to help me by becoming a group POA. They will be the official <span style="color: #0c343d;">Howard FTD Team</span>. I need help. All alone with FTD has become to hard for me to manage. Having many difficulties and I'm lucky enough to have some kind hearted people step up. Hope to be updating soon. Just going to publish now. I'm exhausted. lol Last time I published my blog I forgot how to send it to out via my database. Forge on......</span></b><br />
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<span style="font-size: large;"><i><b><span style="font-family: Verdana;">I want to thank everyone that has helped me with your support over the last years. Your kind communications and financial help has enabled me to do a few good things in this lifetime. Will try my best to carry on rocking and rolling.</span></b><span style="font-family: Times;"><o:p></o:p></span></i></span></div>
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<b><span style="font-family: Verdana; font-size: large;"><i> Howard</i></span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. I'm not starving, but am in the minus everything month. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="background-color: yellow;">yellow</span> donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com5tag:blogger.com,1999:blog-6539769365000202093.post-18770197548881820642014-09-02T12:24:00.002-04:002014-09-03T19:42:41.196-04:00Howard Glick FTD Update<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<b><i><span style="color: #0d272e; font-family: Times; mso-bidi-font-family: Times;">* I run a private FTD Patient Support Group on Facebook.
The groups for FTD Patients Only and is open to those with a firm
FTD diagnosis. The support group is a place where those with FTD can gather in
a positive environment and realize there not alone. It's also a source of
accurate information which is rare in the quick changing world of FTD. The
director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind
enough to open up there medical board to answer member questions. Please email
me at </span><span style="color: purple; font-family: Times; mso-bidi-font-family: Times;">howardglickftd@gmail.com</span><span style="color: #0d272e; font-family: Times; mso-bidi-font-family: Times;"> to join.</span></i></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><i><span style="color: #0d272e; font-family: Times; mso-bidi-font-family: Times;">Howard</span></i></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Been shedding tasks for a while now. Long gone are the days of
checking this blog multiple times a day how many have visited and what
countries there from. How exciting it was reaching milestones of visitors, receiving
all your supportive emails and winning multiple awards. Just realized this blog
reached 150,000 visitors. Felt good turning the tables on an insidious disease
that sucks the life out a person and making myself a vehicle for awareness and
hope to many.<o:p></o:p></span></b><br />
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">10 years ago FTD entered my life. Forced to leave work on disability
being misdiagnosed as bipolar I just disappeared from the 17+ year career I
had. My career started in NYC and culminated in Seattle. <span style="mso-spacerun: yes;"> </span>Then I just disappeared. Never returned calls from
friends or associates. My absence was a mystery to many.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Some months ago I was contacted by an old colleague and close friend
Dave Ashcraft who had looked me up on the web. I used to manage a string of
independent dealerships in North America for a Japanese business equipment
manufacturer. Dave is now the VP of of the largest independent dealership in
the country, Witt Company, that has dealerships across the Western US including
Phoenix. A few weeks ago I was contacted by the President and owner of the
company Bill Witt. Bill wanted to come visit me in Phoenix. We met at the
Starbucks I frequent. I worked closely with Bill for years and years. You
couldn't find a fairer, more honest and astute businessman anywhere. He was
also a huge handful to work with. Complicated, but you'd be hard pressed to
find a finer individual.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Bill entered Starbucks and his first words were, "Howard Glick,
the last time I was with you was March 2x, 200x at the Metropolitan Grill in
Seattle. You took me and Gail (wife) out for dinner and bought us a bottle of
Jordan wine. Told us you were sick and had to leave Riso.” <span style="mso-spacerun: yes;"> </span>Then I was gone.</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span><br />
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Bill rehashed mutual colleagues and friends across the country that
I've not thought of in years. Some I remembered, some I didn't. Everyone I used
to know was doing well in one form or another. It was good to hear. Bill also
discussed the years I worked with him. Told me I was the best manufacturers rep
he had from the company I worked for and that I always had his companies
interests in the forefront - even if it caused me to have problems with my
company. I broke down a couple of times. Tried to explain FTD. Tried to explain
how I rarely leave my apt., curse out old ladies without realizing I'm doing
anything wrong, frequently eat spoiled food and make inappropriate sexual
remarks. Also that I now have frequent swallowing/choking issues and balance
issues. Explained how I lost my disability from Unum because I was misdiagnosed
which has me living now on the poverty line. Bill asked about longevity. I sort
of lied and told him I'll be around for a long time. No one has a crystal ball
with FTD, but FTD is marinating nicely and I know my time has become limited at
best. At least I'm hoping to move on soon.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Bill told me if there was an emergency and I needed some financial
help, not to hesitate to call and actually called someone at the company in
front of me to let them know if I called to send out help. I was deeply moved
at the gesture, but anyone who knows me knows that I'd be homeless before I'd
make that call. Bill said he would visit me on his periodic trips in. There are
no words to describe how much Bill's visit meant to me. It's soul shaking what
I've lost since we worked together. <span style="mso-spacerun: yes;"> </span>Sitting here at Starbucks crying as I type. 10
years ago I had a consistent six figure income, kids, and a woman I was madly
in love.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Yesterday I received an email from Dave Ashcraft from the same company
in Seattle saying he would be visiting me in 4-6 weeks. “You were one of the
best salesman I've ever known”. I'm looking at my schedule and I'm going to
plan on coming down to Phoenix for a long weekend in the next 4 - 6 weeks. I'll
let you know the exact dates."<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Was recently contacted by a childhood friend. I haven't seen Peter
Herzog since I left for college 35+ years ago. Peter came from Boca Raton, Fl.
last week to look and possibly move to AZ. Peter's son was amazed how we just
sort of clicked again like many of us NYC Washington Heights alum do. While we
were in the car I pointed to a girl and mentioned what a great ass she had.
Both Peter and his 23 yr. old son berated me that she looked really young. Age
just didn't click, didn't cross my FTD corroded mind. Of course I'm aware now
that she was just a kid and am once again on the edge of tears as I'm
typing. <o:p></o:p></span></b></div>
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<b><span style="color: #123e4a; font-family: Verdana; mso-bidi-font-family: Verdana;">FTD Cocktail - </span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">1 part Hypersexuality, </span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">1 part No Filter</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><u><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">1 part Apathy</span></u></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="color: #123e4a; font-family: Verdana; mso-bidi-font-family: Verdana;">= Inappropriate sexual remarks, comments
and behaviors that the FTD'er is unaware of.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">I check out all woman indiscriminately, no matter what the
age. FTD has made me mixture of hypersexuality, no filter - causing
inappropriate remarks and apathy - not caring at the time I make those remarks.
People write to me about there loved ones that aren't aware like I am and how
lucky I am. I'd be a lot luckier if I was dead.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Problems with my neighbors continue with me being the neighborhood
nut. Haven't been in a fight since I was 13, have almost come to blows multiple
times in as many months. Requested from the management that I switch apt. They
said no. Came home to find SWAT in my two story building. The police are always
around. Took away one problem neighbor below me for 1st degree attempted
murder, kidnapping, assault + many other charges. Police interviewed me for an
hour. Heard he's facing life in prison. Guess my apt. community is nice if your
into crack and crazies. The online reviews call it the "Scottsdale Slums." What
can I do, I'm trying to live and stay alive. Pain is constant with frequent
continuous headaches and severe arthritis. Have stomach issues because I
constantly eat what's ever laying around. Don't leave the house much because
I'm me and find myself in a life and death battle with FTD's No. 1 enemy,
depression. <span style="color: red;"><o:p></o:p></span></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Terri and I split up. Its obvious that I'm declining was getting to rough. I downgraded us to friends. No one can ever find
a more loving, caring and loyal person to be with. Neither of us expected my
health decline to speed up like it has. I'm not selfish enough to put her
through FTD hell. We did have spectacular times while it lasted. I'm constantly
having issues with swallowing/choking as well as recent balance issues that are
getting worse. If I was a horse, I wouldn't be typing right now :-)<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">I live on the 2nd floor and balance issues are causing it to become
extremely hazardous going up and down the stairs. This has been happening for a
while but realization that I might get hurt is a very scary and real fear. If I
get hurt, I'm finished. Have not one contact of person to call. When I was with
Peter last week I almost got run over because I couldn't manage to get up on
the vehicle we were getting on. It almost backed over me thinking I was inside.
Screams saved me. Don't know how to describe the <o:p></o:p></span></b><span style="font-family: Verdana;"><b>feel in of having restless leg syndrome from head to toe.</b></span></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Think I mentioned earlier that I just signed a new lease :-) Yesterday
I went back in and asked them out of it because of my health issue. They are
going to let me know, but know about FTD and that I'm pretty sick. I'm thinking
of moving to a different community where there are a different element of
people. I can't deal with the criminal element, drugs etc. Only problem is my
rent will go from $700 to $900. Can't afford to move and can't afford to stay.
I'm very, very, very frugal with money and am in the negative each month. No
reason to budget since I only have what I have and there is nowhere to cut
back. Will never beg or ask friends for money. For me money is like musical
chairs. When the music stops and there's no seats, game is over and I check
out. Won't go homeless or assisted living route. Don't mind my FTD rant.
Welcome to my world.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Happiness is overrated and I can't remember the last time I was really
happy. Bill Witt and Peter Herzog gave me wonderful reminders and glimpses of
my life gone by. I've had a Life. A wonderful life. No regrets in life. I've 2
wonderful children I rarely see and still have the opportunity to continue on
somehow and do work that will make a difference in peoples lives.<o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Somehow I'll try and keep carrying on. Will try and keep this blog
going and return to filming for Howards Brain, the FTD documentary that I've
close to 300 FTD hours filmed. Filmed 45 minutes a few weeks ago. First time I
filmed in months. lol This is my first blog in months. Guess I've people out
there, but have never felt so alone in all my life.</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">FTD causes behavioral issues that are devastating to FTD'ers and the
loved ones around them. Depression and FTD go hand and hand. Many take
anti-depressants, anti-anxiety, antipsychotics etc. to help level the playing
field. I take none. From this you see my highs and lows. Functioning that
permits me to write this blog, run my 2 support groups and do what I do. My
life would be easier flat from mind dulling drugs and there's nothing wrong
with chemical help to make an FTD'ers life easier. But that's not me. I don't
do "easy". Never have, never will. <o:p></o:p></span></b></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">Been sick a lot lately with my stomach. Just keep eating bad food.
Made tuna at home. Don't know if mayo was bad, tuna left out etc. Was pretty
sick. Of course it was in the fridge and ate it again days later. Same result,
sick again. Often leave food out and eat it days later without
paying attention. I know it's not good, but don't even think or care. Just
hungry and it. Eat out mostly to try and keep from getting sick. Usually cheap
mex etc. Glad I've FTD or I'd think I was losing my mind. <o:p></o:p></span></b><br />
<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;"><br /></span></b>
<br />
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<b><span style="font-family: Verdana, sans-serif;"><span style="-webkit-text-stroke-width: 0px; color: black; font-size: small; font-style: normal; font-variant: normal; letter-spacing: normal; line-height: normal; text-transform: none; white-space: normal; word-spacing: 0px;">We often hear those with FTD are unaware there's anything wrong with them. People around me still don't realize there's anything wrong with me most of the time. I think :-) Well, FTD has gone from lurking in the recesses of my mind with an invisible attack, to an all out frontal physical </span>assault. Am hoping to bounce back. Almost</span></b><b><span style="font-family: Verdana, sans-serif;"> didn't make it this morning, but an early email from the director of AFTD got me going. </span></b><br />
<b><span style="font-family: Verdana, sans-serif;"><br /></span></b></div>
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<b><span style="font-family: Verdana, sans-serif;">Routine, routine, routine. 7 days away. It's the only way I know to keep going. So hard now. Have been back at Starbucks for about a week now. Have also filmed 1.5 hrs for "Howard's Brain" documentary. Am going to fight like hell and return to my 7/7 - 7 days a week, 7am Starbucks routine. Will do my best to get back to consistent blogging, though I've no clue if..........</span></b><br />
<b><span style="font-family: Verdana, sans-serif;"><br /></span></b>
<span style="font-family: Verdana, sans-serif;"><b>On another front, preliminary discussions are now under way for an FTD group home in the Phoenix area. Those with real interest in this please contact me at howardglickftd@gmail.com I'm also going to be the guest speaker at the "Professional Association of Senior Referral Specialists" later this month and this will be one of the topics I will be discussing. </b></span><br />
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;">I want to thank everyone that has helped me with your support over the
last years. Your kind communications and financial help has enabled me to do a
few good things in this lifetime. Will try my best to carry on rocking and
rolling.</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="font-family: Verdana; mso-bidi-font-family: Verdana;"> Howard</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span><br />
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<b><span style="color: #6b006d; font-family: Verdana; mso-bidi-font-family: Verdana;">Thank you to those that
have sent me letters, gift cards, Starbucks, cash etc. They are deeply
appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver. I'm not starving, but am in the minus everything
month and cannot afford the medical help I need. For those that want to help, there is
a yellow <span style="background-color: yellow;">Donation</span> button on right top of the page. You can choose a recurring donation each month of any amount, which I would be eternally grateful for. You can also mail to my address
below with gift cards, checks or cash. All help is deeply appreciated:</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="color: #6b006d; font-family: Verdana; mso-bidi-font-family: Verdana;">Howard Glick</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="color: #6b006d; font-family: Verdana; mso-bidi-font-family: Verdana;">7791 East Osborn Rd. apt.
170E</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
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<b><span style="color: #6b006d; font-family: Verdana; mso-bidi-font-family: Verdana;">Scottsdale, AZ 85251</span></b><span style="font-family: Times; mso-bidi-font-family: Times;"><o:p></o:p></span></div>
Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com6tag:blogger.com,1999:blog-6539769365000202093.post-83721490665852111502014-04-08T13:12:00.002-04:002014-08-22T11:36:38.340-04:00FTD and Death with Dignity<div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">I'm beat to shit. Just so tired of living I've FTD but don't ever really feel sick. Wake up call is swallowing issues and choking daily. Houston, we have a problem. Guess there is something wrong with me. Scans, neuropsch testing and years of testing and medical abuse culminating in an FTD diagnosis might be real. Feeling death knocking for the first time. Living with this shit called FTD sucks and is exhausting. </span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Living alone with FTD is so hard. Living with someone or a caregiver would be impossible. </span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Was talking to my friend Marc last week. I've no Power of Attorney, no will or end of life plans. No list of people to be contacted, no death plans. My life and death is just one big FTD fucking mess. Don't have shit organized. Trying, but have been trying for years. Just can't accomplish shit. Screwed up my son's ticket to come visit last week. Booked him to come in October instead of now. Corrected it except the the additional ticket is still charged. Guess I need to go FTD some asses. Received a comforting letter from a friend saying everyone screws up plane tickets. Not me. Why not me. This is Howard Glick who use to fly 120 flights a year, 200+ nights in hotels, car rentals and business dinners planned both domestic and foreign. My 17 year career and I booked every flight, room etc. Guess what? This was just my commute to work. This was without my demanding job. Now I can't even book ONE fucking flight without FTDing it.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Is it death with dignity or life with dignity? Haven't a clue. Can't remember or figure out aphorism's anymore. Just another loss to FTD. FTD is a universal fuck. Not only do you get stripped away of all that's good and wholesome in your life, your family and loved ones get robbed as well. It's a one way street that leads to Hotel California or assisted living before your time, more misery and then death. Excuse me for being the purveyor of doom, but this FTD we're talking about, not flufferfoot.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">So what's precipitated my thoughts of checking out of this glorious life? Is it the cacophony of life's missteps in the last 10 years. Is it because I'm beat to shit by life, exhausted and am looking for the long rest that accommodates death. Anyone in the unfortunate world of FTD is beat to crap. Patients, caregivers and family members are rocked and rolled. Everyone else gets to somehow sigh, breathe and try to put there lives back together. We become worm food.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">I've a ton of symptoms, issues but they like awareness of FTD keep slip sliding away. Yes, in 3 years since diagnosis I've beat Cancer and Heart disease. FTD, well it's stealing from me blindly like everyone else with the disease. Three months after FTD I was told I had prostate cancer. at 53 my choices were radiation seeding, slice and dice or robotic surgery. My only care and question was, "What will give me the best chance of having sex again and how long will it take."? Cancer, big deal. Can only deal with one terminal illness at a time. Sex, well can't very well deal with the FTD hypersexual symptoms that plagues me with a Cancer/ FTD crossover. 2 days after prostate surgery and removal was at Starbucks blogging with my catheter wagging like dog leash. Got past that and was having sex months months after it was robotically removed. Next up, heart. Went to the Cardiologist alone and he went over some stuff. Hadn't a clue what was going on. All I knew is I showed up at Columbia in NYC the next morning. They looked at me cross-eyed that I was alone and really hadn't a clue what was going on. Next thing I knew I was on slab having 3 stents and other stuff done. The surgeon did watch the 'Howard's Brain" trailer and we did discuss it the next day. Did my 2 cents for FTD awareness. Friends were shocked. Big deal, they didn't even want me to leave the hospital since I was alone. Told them I'd take a cab. Right, took a bus. Was back at Starbucks a day later doing my FTD blogging.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">So where am I going with all this. I've absolutely no fucking idea. I'm sitting here at Starbucks pretty fried at 8:40am and not a clue to what I'm writing. Totally lost. To tired to go over what I've written and figure out what I'm writing about. My day is over and it's a Saturday. Usually I don't write on Saturday. Saturday is date night. I get together with Terri and every Saturday night is what I consider our first date. I gear myself up no matter what. By gearing myself up doesn't mean I'm not an FTD mess. Am lucky that Terri has patience with me. I try my best, but though Howard rules, my unruly sidekick FTD goes from hanging out to taking over. Time to checkout of Starbucks. Hands in pain, I'm in space and life is beautiful. Why? I got out and did something purposeful. The bane of my existence isn't me, it's FTD and I'm kicking it ass.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFj59v63aYUAGZAMXUrJLzh29IfujsjvKooNY_-Jshy0GyUtH68t-j9NsELiOxfpXj8J6m1Aul8tRp72fUXspTQsTcxtjC-veHSMpW9nrym28eAtj5US9vC4aXS4Gxj4LFPVUrQUN_G_E/s1600/IMG_2205.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFj59v63aYUAGZAMXUrJLzh29IfujsjvKooNY_-Jshy0GyUtH68t-j9NsELiOxfpXj8J6m1Aul8tRp72fUXspTQsTcxtjC-veHSMpW9nrym28eAtj5US9vC4aXS4Gxj4LFPVUrQUN_G_E/s1600/IMG_2205.jpg" height="200" width="150" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhybhGlJF-ftIw9zTR8AArLuoHXQy9gcEIs-9pUFyo8UL3YQGt0I2IXLIA1dt66afwLku8z51gTYI4VBwTj57I2cyJwbhkbEKKp60UsP9NXmovWukkFhPjyDybxck0fwhIf44TnXDM6PUw/s1600/IMG_2196.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhybhGlJF-ftIw9zTR8AArLuoHXQy9gcEIs-9pUFyo8UL3YQGt0I2IXLIA1dt66afwLku8z51gTYI4VBwTj57I2cyJwbhkbEKKp60UsP9NXmovWukkFhPjyDybxck0fwhIf44TnXDM6PUw/s1600/IMG_2196.jpg" height="320" width="238" /></span></a><span style="font-family: Verdana, sans-serif; font-size: large;">Now it's a couple of days later after the above. Still feeling beat up by life. Not sorry for myself, just beat up. Am lucky that a generous person bought my kids tickets plane tickets to see me. My son will be coming next week. Have seen my kids 3 times in 3 years. FTD bankrupted me like it does many others. Want to take my son to a baseball game, but so confused as to how to buy and if I can afford tickets for us. Went to Costco yesterday, they sell Arizona Diamondbacks tickets. Put a few things in the wagon, got confused, overstimulated and overwhelmed and walked out leaving the wagon behind. I probably do that 80% of the time wherever I go. So tired of this life. Have taken my son once in his life to a baseball game. That was in NY a couple of years ago. Had a choice between two games. Checked the weather and found tomorrows game was 75 degrees with a 30% chance of thundershowers. The day after clear and 80 degrees. Both were night games. Of course having FTD and being blessed with impeccable reasoning and judgement I chose the cooler night with chance of thundershowers instead of clear weather. Players never made it onto to field. We laughed and had a bit of fun. We sat there for an hour or so in the pouring rain before the game was called a rainout can cancelled. We were also in a 95% empty stadium. Now I'm living in the desert so I don't have to worry rain, but making even little decisions or trying to organize anything are crippling tasks. Not sure if we'll make it to a game next week. I did check and Arizona is playing the NY Mets. It would be ironical to see the mets after being at Shea Stadium for the rainout.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Went to a Groupon Pizza/Italian restaurant with Terri last Saturday. We couldn't sit outside because they had a wedding party complete with tuxes and a priest that booked the outside. I wasn't a happy camper. We sat a the bar with annoying rap music now waiting for our pizza to go. Couldn't take it so we sat outside waiting for the pizza. Some wedding party girl all bush eyed in a wedding mesmerized trance came to us with a tray with shot glasses of bubbles or something ridiculous like that. She asked if we wanted to toast the bride and groom. "Fuck them" I said. Her face instantly turned to horror. Couldn't give a shit that I said it then and couldn't care less now.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Just a day in the life of this FTD'er. What happened to Howard Glick and where has he gone. Truly tired of this shit that's FTD and me. People tell me I'm the most tenacious person they've ever met. Been hearing it for as long as I can remember. I will keep fighting to the bitter end, but I am beat to shit. Guess someday I'll die. Can't wait. I need the fucking rest. I'm also so sick of these fucking headaches!!</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Was going to get a haircut this morning. Starting to look like a wild man, but I blogged. To tired to drive and I'm totally out of it now. Want to leave my Starbucks fiefdom, but drained. 10am here an I'll head home soon as I can move. Writing this gets harder and harder. Not even sure how I do it anymore. I'll get home which is 1/4 of a mile and won't leave my apt. till tomorrow when I start all over again here at Starbucks. Not even sure why I write this shit anymore.</span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<br />Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com24tag:blogger.com,1999:blog-6539769365000202093.post-74449772381710464632014-04-04T11:32:00.001-04:002014-04-04T11:39:39.946-04:00FTD and Swiss Cheese Memory<b><span style="font-family: Verdana, sans-serif; font-size: large;">Received an email a few weeks ago from an old work buddy. He Googled me and tracked me down through my blog etc. Haven't spoken to Dave in about 10 years. We we're very close. I sort of just disappeared off the map at work. Never knew what hit me. I was out on disability and Tamara used to give me messages that Dave and others used to call. I never called anyone back. Besides being in the beginning stages of FTD, I was also drugged up out of my mind for the 6 six years being misdiagnosed as bipolar. A SPECT scan, which is less definitive than a PET scan showed FTD 2006. It was normal but showed reduced truer amounts in the anterior temporal and frontal lobes. Due to lack of FTD awareness it wasn't followed up upon until 2010, when a PET scan clearly revealed progression and FTD. Lack of awareness which caused me to lose years of my life in a medically induced fog and lose my work long term disability, because Unum decided they could get out on a legal technicality. I'm hoping this blog is increasing awareness which will lead to a quicker diagnosis of others.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Dave called me and we caught up. It was great hearing from him and I was glad he was working with the same company in Seattle Wittco. Another old buddy Sean was still there and it was good to hear they were still working for Bill Witt. Bill Witt was an astute, savvy businessman, politician and very fair to his workers. I remember battling him back in the day, but don't remember exactly what. I wasn't surprised at all that the same crew was together.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Mid-conversation Dave brought up how we shared Seattle Seahawks season tickets back in the day. We discussed the Seahawks a bit. I was a bit shocked because I didn't remember having tickets with him. In fact, I didn't even remember going to a football game with Dave or anyone else. I didn't mention to Dave I didn't remember. It shocked me I didn't remember and it's so hard to say, "Hey, I don't remember that or I'm not following you." Many of us with FTD just keep going when we run into situations like this. I did speak to my daughter Chelsea later that day and she told me I used to take her to football, baseball and basketball games when she was a kid. Don't remember a single time. Living with FTD is a hell of a thing.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">When you have FTD, alzheimer's or dementia, many try to make you feel comfortable or make light of it by saying, "I forgot my keys this morning, I must have dementia to. ha, ha" Fuck you, you don't have FTD/dementia and you have no idea how hurtful that is and how you make that person want to isolate themselves. You don't go up to a person with cancer and say, "I've a new zit on my face, so I might have cancer to, ha, ha." Of course there's a big difference. Many cancers are curable, FTD is not. FTD is incurable, untreatable and unstoppable. I've had both and neither are fun.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Whether it's memory or not following the conversation, you keep going. A couple of weeks ago I was on a 3 person panel in front of 250 people answering questions at the AFTD Conference. By the time the others answered the questions, I didn't have a clue what the original question was. I just sort of improvised or bullshitized my way through. Not sure if it was apparent or not. Really couldn't care less. Think I had something meaningful to say, even if it had nothing to do with the question. I wasn't trying to deceive anyone, but it's not easy losing your mind. You just get through the best you can and keep trying to survive. Many write to me saying there loved ones just look at them silently or say yes or no when asked a question. The caregiver feels there playing games or being deceptive. No, this is the furthest thing from what's happening. What's happening is the FTD'er is not following your question or the conversation. There not ignoring you or playing a game. They simply aren't' following what your saying. You need to have patience and understanding. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">We are sick and sometimes there's nothing you can do but have kindness and understanding. Family members and friends need to understand and give some leeway to those with FTD or dementia. We just can't stop and say, "I'm not following you" all the time. At a party or with a group of people, I can easily get lost. overstimulated and overwhelmed. With FTD, memory is supposed to be the last thing to go, but from what I hear there are many in my patient support group and out there like me with swiss cheese memories. Not Alzheimers type memory loss, but years that are dropped out. I've realized years ago that I don't remember my children being born or where they were born. I know, because I've been told, but no memories of those years exist. It is what it is, but you just keep on keeping on. The other night I went to shut off my cell phone and I forgot how. Sort of shook my head, smiled and thought, "Well this is a new one."</span></b><br />
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<span style="color: blue; font-family: Verdana, sans-serif;"><b><i>Thunder, rainbow, nuclear bomb and sandstorm the other day from my balcony</i></b></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Was talking to my girlfriend the other night and was telling her that I realized that I don't remember working with Dave or being with him at. I remember Dave, Sean and Bill. Remember Bill's wife Gail who was also a lawyer. I can envision them and remember them perfectly. Just don't have memories. The more I think about periods and people in my life, the more I realize how much of my memory is gone.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Dave told me I sounded great on the phone. Told him that was one of the curses of FTD. Right now I can sit with anyone short term and they wouldn't have any idea I'm sick. usually doesn't take long for a head turning moment though. I receive communications every day from FTD patients and caregivers that are going through hell. Relatives, friends and doctors don't believe there anything wrong with the person sick with FTD. FTD is still a insidious, unknown disease that causes a smorgasbord of symptoms. To live through this revolving door of symptoms is pure hell.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">My memories of my 17 year career starting in NY and ending in Seattle are just faces and scattered names. Don't remember many faces, names or events. I remember major accomplishments or have memories of memories, but don't remember the actual events. I moved from NYC 6 months ago and my memories from there are now getting to be far and few between. My memory issues can be a combination of being on up to 17 pills a day for 6+ years, about 100 ECT's (electric shocks) and of course FTD.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">To end on something fun, I wrote in my last blog about one of my docs, Dr. Laurie Mullen who is a good friend of mine and came to visit me to make sure I was doing okay back in NYC. Laurie checked out my refrigerator to see if I had food and then checked out the freezer. In the freezer she found a hardcover book and started laughing. She took the following picture and wouldn't let me remove the book from the freezer. FTD - sometimes you just have to laugh.</span></b><br />
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com8tag:blogger.com,1999:blog-6539769365000202093.post-44632234197529292542014-03-29T13:58:00.000-04:002014-03-30T10:05:25.822-04:00Patient Quality of Life<b><span style="font-family: Verdana, sans-serif; font-size: large;">For a few days the eyes of the world were focused on White Plains, NY.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">AFTD convened the FTD community for the 2014 AFTD Educational Conference in White Plains, NY. It was filled with the best FTD medical minds in the country, caregivers and those affected with FTD.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Two years ago AFTD decided to break the separation barrier and invite FTD Patients. I was one of 4 that attended that conference in Atlanta. Last year in Utah there were 12 affected with FTD and this year a whopping 36 FTD'ers showed up in NY. This was the worlds largest congregation of those affected with FTD to date. The phone lines at Guinness records were ringing. I've been lucky enough to meet the same people year after year. We've become friends throughout the year, as well as a barometer to ourselves. A wonderfully realistic and surrealistic exposure of our lives and the shape of things to come. Was also happy to see many of the 90+ from my FTD Patient Support Group come to NY from across the country. It was a show of alliance in support in the fight against FTD and to show the desire that those with FTD want and need there voice heard. Want to be heard that there needs to be a larger coordinated effort in helping FTD'ers get together and that we're not a bunch of crazies that will have a riot. Yes, all of us reach the stage where we can't communicate, but with earlier detection and diagnosis more of us are living longing. Yes, there are those that are 2 years and out, but many are now known to live 10+, 20+ years. Each person has a different degree of awareness and insight. One thing is for sure. We are people sick with a rare brain disease that finds comfort and understanding being around others that sure the same disease and fate. Doesn't matter how different the variants under the umbrella disease known as Frontotemporal Degeneration vary. sd :-) FTD is FTD to those who have it and we see ourselves in each other.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">You take the normal person fighting a brain disease and behaving inappropriately, not working, not able to drive and they spend most of there time in bed watching TV or being shuttled to old age centers where there out of place. It's enough to send anyone over the hill. <i><span style="color: blue;">It's a proven fact that FTD'ers in contact with FTD'ers whether online or in person are an immeasurable amount of support. Better for the FTD'er, caregiver and the family. This is the proven ripple affect.</span></i> I've been running a support group fro 90+ FTD'ers for over two years and this the feedback from FTD'er and caregiver alike. AFTD is witness to this with the AFTD Director, Sharon Denny being a permanent guest member and the only one in the group without FTD. Members of the FTD Patient Support Group routinely get together. In states like Colorado they meet monthly at an assisted living as well as others. When traveling we constantly reach out to meet one another. Phone calls and little gifts in the mail help. I've met dozens and dozens of FTD'ers in my travels and many have visited me. Yes, this isn't for everyone with FTD, but three's nothing like visiting someone in assisted living who is in there 40's or 50's where the average age is 80+. Many with FTD get placed before there time. This is not a reflection on the caregiver or a societal cause. This is cause and effect by the insidious disease know as FTD. Nothing in the near future will change this, but we can find more comfort for those with FTD everywhere.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">36 of 248 attendees at the AFTD conference were those afflicted with the disease. There is a Hebrew word called "Ratzone". It means extreme desire. All 36 had this in common for wanting a better life with happiness and support.</span></b><br />
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: large;"><i><b>One person from my group suffering from both FTD and AD had Amtrak special services help get her to New York from Delaware. This former genetic researcher made the trip alone. She is pretty far into into progression and showed more guts than anyone I've ever met in my life. Another FTD'er came in with her sons from NJ to pick her up from NY Penn Station and take her to the conference. All to make it to the AFTD conference to learn and contribute. These are my FTD suffererer heroes. </b></i></span><br />
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<span style="color: blue;">I'm forever grateful to AFTD for inviting FTD patients as well as having travel grants for those of us who couldn't afford to make the trip.</span></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Every year I host a pre-AFTD Conference Patient/Caregiver dinner the night before the event. This year we had 37 at the dinner. It was at a local Italian restaurant. We took over the restaurant and the dinner lasted 3 hours. Most of us never met each before this dinner and it's amazing how FTD'ers can communicate and blend together. This dinner wouldn't have been possible without Diana Winoker (FTD'er) who made all the arrangements. Diana like me has no caregiver and came in at the last minute and rescued the dinner after I faltered and couldn't organize anything. Diana broke her ankle 3 days before the Conference and still managed to come up from Florida. Cast and all. Diana was also featured in a Alice G. Walton Forbes FTD Patient Series. <a href="http://www.forbes.com/sites/alicegwalton/2012/05/15/the-disease-that-stole-my-career-inside-the-mind-of-frontotemporal-degeneration/"><i>Forbes - Diana Winoker</i></a></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">We also had a breakout session meeting with the 36 FTD'ers that went on for 90 minutes. We all shared and learned. We understood each other and there was a bit of gruff. Big deal, we have FTD, apathy rules and we continue on unfazed and kept on going. No caregivers or outsiders to be shocked or scared away. There is no way to describe how much this meant to the participants. Sharon Denny led the group with my help. I used to lead it, but am sort of taking a back seat. Just not to sure of myself anymore. I will say that one FTD'er that was having language issues had the most amazing step in rescue I've ever seen in my life. Kudos to Sharon Denny for stepping in and gracefully telling the woman's story while comforting and showing friendship to the person.</span></b><br />
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<span style="color: red;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">One bit of humor from our patient breakout session. One FTD'er laughed about his wife finding his papers in the </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>refrigerator. I disclosed last year a doc whose an excellent friend checked out my fridge for food and found a hard covered book in the freezer. Only in FTD World.</b></span></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Many FTDpers have behavioral issues and don't do well in a mixed caregiver/patient group setting. It's also tough to coordinate because caregivers need there alone time to vent and get away. I had a caregiver who couldn't take it and left. We're still friends 3 years later with her helping me. If I could I would set up FTD Island for all FTD'ers to go to, but I don't play lotto. Maybe in the future as the FTD population grows, a special wing in Assisted Living Facilities for FTD'ers will be set up, but for now local get togethers would be helpful.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><span style="color: blue;">AFTD has set up a network of volunteer run caregiver support groups across North America, but it's extremely rare for those afflicted with FTD to get any support. These caregiver meetings should have a room adjacent for the FTD'ers to get together. This would not only free up caregivers from worrying about there loved ones, but there loved one's would be able to communicate with the only people that really understand or relate to them. A nearby pizza place of Assisted Living where an FTD'er is located would also be excellent locations. Of course this isn't for everyone, but many would be helped. </span><span style="color: blue;">The only way for this to happen would leadership from the top. FTD patient quality of life needs to take precedent</span><span style="color: blue;">. I'm hoping AFTD who has is stretched thin, will step up to the plate and heavily promote FTD'er get togehters. I'm always told to have patience. Change is slow. I've no patience, I have FTD. UCSF has support groups for caregivers and FTD'ers and a few progressive leaders have pushed this around the country. We need a big push. I wish I could do more to lead this charge, but I'm maxed out, with my capabilities slipping.</span></span></b><br />
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Last year I brought the AFTD "Food for Thought" program to my FTD Patient Support Group. People with FTD want to join the fight and this would help with awareness, raise funds for AFTD. This would also give those with the disease purpose. I was soon contacted by a fellow FTD'er. Probably the calmest and nicest guy afflicted with FTD. Also one of the smartest people on the planet. (for privacy reasons I won't mention his name or former occupation) He was told he could not participate after volunteering because FTD patients aren't welcome. Ripped the wind out of his sails and part of my heart out. I immediately contacted AFTD who told me they had no control over the Independents that run the programs. For those of you doing these programs I'm hoping in the future you will look at this with an open mind and heart. AFTD, though not in control can lead the charge to change.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">FTD is a very lonely disease and there are few resources for those with the disease. Most with FTD have never a met a soul with it. Tough to slowly lose your mind alone.</span></b><br />
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: large;"><b><u>Comments from FTD'ers about the Conference</u></b></span><br />
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<span style="color: #10131a; font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><b>I can't remember what was said at the conference although I'm sure it was brilliant. The impact of meeting my fellow FTD'ers was remarkably strong for my unemotional self. There seemed to be an instant camaraderie. Things that struck me were that we are a very insightful group for people who are supposed to be unaware. We are very empathetic with each other, though we may not be empathetic with those who don't share our disease. Even though social skills are not our strong suit, we are social among ourselves because we understand each other. I wish we could all live together.<o:p></o:p></b></i></span></div>
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<span style="color: #10131a; font-family: Verdana, sans-serif; font-size: large;"><i><b><br /></b></i></span></div>
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<!--StartFragment--><b><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: #10131a;"><i>This was a FTD
conference, I have FTD, I so wish I could remember the conference itself more
clearly but I am only remembering bits and pieces. What I remember the most is
the people and there was a sense of like mindedness. The
"professionals" interacted with the people with the disease. Outside
of the scientific research, I truly believe the humanistic side to
understanding is imperative to correct help. I am grateful for the opportunity
to join with that kind of interaction. The most impact I came away from the
conference was meeting the people I have come to know through Howard Glick's
blog and support group. Their faces, stories, laughter and truth, will be
forever etched in my mind</i></span><!--EndFragment-->
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<span style="color: #10131a; font-family: Verdana, sans-serif; font-size: large; mso-bidi-font-family: Helvetica;"><b>The AFTD conference was one of the most wonderful
experiences of my life. It was very informative, but more than that, was the
bonding experience I came away with. First, and foremost, meeting all my fellow
FTD'ers, whom I've come to know and love, through Howard Glick's FTD Patient
Support Group, as well as those I met for the first time. The atmosphere was
one of love, caring, and understanding. We were all there together, with the
same struggle. We could be ourselves, and each one of us knew what the other
was feeling. There was no judgment or questioning. It just was. <o:p></o:p></b></span></div>
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<span style="color: #10131a; font-family: Verdana, sans-serif; font-size: large; mso-bidi-font-family: Helvetica;"><b>The AFTD organization is so supportive. I had a few
AFTD staff members come up to me, introduce themselves, ask me if I thought the
information was helpful, and listened to my story. They had a sincere
understanding and hope. <o:p></o:p></b></span></div>
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<span style="color: #10131a; font-family: Verdana, sans-serif; font-size: large; mso-bidi-font-family: Helvetica;"><b>I am very much looking forward to next year's conference in San
Diego.<o:p></o:p></b></span></div>
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<span style="color: #10131a; font-size: large;"><b><i><span style="font-family: Georgia, Times New Roman, serif;">It was great
meeting people who were brought together for one cause, FTD. I had a chance to
meet fellow patients and folks I only knew from the FTD Support Group. The AFTD
national meeting was a life changing event for me. I can't wait to see everyone
again!</span></i><span style="font-family: Verdana, sans-serif;"><o:p></o:p></span></b></span></div>
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: large;"><b><u>Caregiver comment</u></b></span></div>
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<b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><span style="color: #10131a;">My Mom, sis and I all attended the AFTD's national conference on March 17th in New York. It was an amazing experience for all of us. I highly recommend you loved ones contact </span><a href="https://www.facebook.com/howardglick.ftd"><span style="color: #2d4486; text-decoration: none;">Howard Glick</span></a><span style="color: #10131a;"> and see about trying to join his online support group. you must have a firm FTD diagnosis to get in and no one without one is allowed in. My Mom has found so much support, hope, and acceptance in this group. I honestly don't think she would be dealing with life as well without the support of so many others in her same shoes. The conference is in San Diego next year, in April. The AFTD gives travel grants for caregivers and those with FTD to be able to go.</span></span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"> <span style="color: blue;"><u>Additional Comments</u></span></span></b></div>
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<b><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;">Hello Howard,</span><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;">Thank you so much for all that you are doing..... It was wonderful to meet you at the conference.... I will always remember seeing you and having the feeling that I was truly going to meet the most impressive "rock star" ever..... You are amazing as you give so much to a community in the midst of confusion, pain and loss. </span><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;">I co facilitate a caregiver support group in suburban Philadelphia and after meeting you and attending the conference, we have decided that we need to seriously talk about a group for those with FTD.. You are a true inspiration. Again, thanks and God bless you. </span><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;">Sincerely, </span><br style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;" /><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;">Sandy </span></b><br />
<b><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;"><br /></span></b>
<b><span style="font-family: Helvetica; orphans: 2; text-align: -webkit-auto; widows: 2;"><br /></span></b>
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Hi Howard,</div>
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As usual, great job on the blog. You write in a way I comprehend. You made a really great point about the need for more face-to-face patient support time. I believe that as well. As challenging as it was to make the journey, try to keep cognitively present, juggle the money...seeing everyone has been the most therapeutic thing that has happened to me since my diagnosis. Meeting and having that immediate connection with everyone you have brought together through your FB group...amazing!</div>
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Thank you Howard.</div>
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You have inspired me to try to put together people with FTD I my neck of the woods. I have a plan to chat with my doctors, caregiver support groups in the area, and see who would be interested. I just know that there are people who could benefit from such an experience. I don't know where or how well I will be at this challenge, but try I will. At the same time advocating for the AFTD in order to organize more awareness, fundraisers, ect. Either wish me luck or tell me I have lost my mind!</div>
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Howard, I want you to know, that I am here, caring about you. Sometimes I wish I were there, just to show you that I will do whatever I can for you as you continue onward, stumbling at times. I'd be there as fast as I can if you ever need someone there who understands.</div>
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<b><u><span style="color: blue; font-family: Verdana, sans-serif; font-size: large;">Howard Glick Observation</span></u></b></div>
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b>
<b><span style="font-family: Verdana, sans-serif; font-size: large;">This is my 3rd FTD conference around the country and it's just white people that are there. Not one hispanic, african american or asian present. (maybe 1 or 2 in 3 years). There's a lot of theories why no people of color or minorities are not diagnosed with FTD. I've written about this before and will again. Truth is it's about who has better health insurance and money. PET scans and getting diagnosed with FTD is an expensive, long process. Those that have money and better health insurance get help. We need more awareness now. It's proven the Alzheimer's has a higher rate of diagnosis amongst African Americans than Caucasian. Logic dictates there would be an FTD population and I'm sure there is. Many out there are being misdiagnosed with a mental illness and what time they have left for them and there families is going down the drain.</span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b>
<span style="color: #38761d; font-family: Verdana, sans-serif; font-size: large;"><b>AFTD is a small wonderful organizations with not much resources. Thank you AFTD for holding this conference, helping with travel grants and giving many with this disease hope of living a better quality of life with FTD. I look forward to AFTD Conference 2015 in San Diego.</b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Please visit Lorrie Cox's caregiver blog on the conference including slides of all the medical presentations. I've known Lorri for years and is one of the many that tell me I'm just like there husbands.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><a href="http://www.caringbridge.org/visit/johnjaycox/journal/view/id/5334f5a5a689b4783765f65b"><i>Lorrie Cox FTD Blog</i></a></span></b></div>
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b>
<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com0tag:blogger.com,1999:blog-6539769365000202093.post-39285980402344480872014-03-20T12:26:00.003-04:002014-03-20T20:18:58.376-04:00My day<b><span style="font-family: Verdana, sans-serif; font-size: large;">FTD is a very lonely disease. Day in, day out you don't recognize yourself and are estranged from those around you. No worse feeling in the world than knowing you love your kids, but don't feel comfortable around them. Of course it's not them nor any of there actions. It's you trying to fit into a person that is no longer you.You somehow try to keep the facade of the old you in front, but it fades. I push the envelope in trying to explore my awareness, but I'm growing tired. Went yesterday to check out a neighborhood gym that has a special $10 a month membership. I was given a tour and shown a treadmill that had a TV on it. Guess asking if it showed porn isn't a normal question. Five minutes ago a sip of my Starbucks drink went straight down throat unregulated. Choking or drowning is now a daily occurrence. I don't keep food at home because I eat spoiled food, food left around and even eat it off the floor. I don't like eating out because my behavior around people gets me in trouble, as well as noise and crowds don't do me well. I pick up food and take it home, but now I'm concerned about choking to death at home. That's fine, have to die somewhere. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">My days are still 7/7. Seven days at Starbucks around 7am. A few hours there and the rest of the day is gravy. Besides speaking to some Sbux buddies my days and nights are alone. Just checked out a woman's butt here at Sbux. Don't even care if it's noticed anymore and really don't give a shit about explaining FTD, awareness cards or anything else when issues occur. Almost got into a fight and the person stopped in the middle and said to me, "your handicapped" and left. Sometimes have happy hour $3 chicken wings at night, but have started swallowing hole bites or choking. I've a girlfriend I see weekly and we have short spectacular times together.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">People have brought up Assisted Living. That will never happen. I'm a social guy who can't be around people. I've met dozens of FTD'ers. Have seen all variants and stages. Have visited FTD'er friends in assisted living and know many there. Nothing like being somewhere and not being able to hide from who you are. I'll pass.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Have been told I might qualify for a scholarship. Spoke to my ex-wife about me now making my funeral arrangements. Have decided on a Jewish burial and Yaffa told me I should qualify for scholarship funeral. That would be nice because if I spend my money now on funeral arrangements and run out of money, then I'll have to eat string beans, choke and be gone. Won't do assisted living or the streets. Has nothing to do with me being Jewish, living in Israel or having fought in the Israeli army. A few months ago I asked my daughter if she wanted daddy/daughter tattoos done. She had a small one on the back of her neck in Hebrew with one of my "quotes."She was very excited about daddy/daughter tattoos. I fought her bone and dog over that tattoo a couple of years ago. I've none on my body and would of never considered one 99.9% of my life. Spoke to Chelsea a few days before the AFTD conference and asked she decided on a tattoo for us. She told me we shouldn't have tattoos done. My son Myles is a religious Jew and in order to be buried in a Jewish cemetery, you need to be tattoo free. This is the least I can do for my son.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Life isn't easy, but no one gave me a happy pass at birth.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com6tag:blogger.com,1999:blog-6539769365000202093.post-71454137412189571672014-03-09T13:02:00.002-04:002014-03-09T20:06:05.290-04:00Giving up Driving<b><span style="font-family: Verdana, sans-serif; font-size: large;">Woke up last night choking. Choking on my own phlegm. Starting to seriously think about dying with dignity.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Contacted my daughter Chelsea a few days ago. She's a sophomore at Washington State University. A straight "A" student. Doesn't drink or party. Both my kids are doing amazingly well and I'm so proud of them, considering growing up with FTD dad. Told Chelsea I need to give up driving and will giving her my car at the end of the Arizona summer. I'd give up driving now, but we're facing the Arizona summer with temperatures routinely over 110 degrees.</span></b><br />
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<b><span style="font-size: large;"><span style="font-family: Verdana, sans-serif;">I've had people drive with me recently and everyone agrees I'm an excellent driver. To the naked eye I drive fine. People also say they can't tell I'm sick, that I look and act fine. All FTD'ers are familiar with people questioning whether we are sick or not. We are driven crazy that we are so sick, dying of a progressive terminal brain disease and people question or make light of it. </span><i><span style="font-family: Georgia, Times New Roman, serif;">Yet, when it comes to driving the same logic doesn't apply.</span></i><span style="font-family: Verdana, sans-serif;"> Many FTD'ers have no awareness or insight that there sick and have to have there license pulled. Some states revoke your license immediately upon FTD diagnosis. Many have some awareness won't give up there license do to independence, logistical needs, work, survival or simple human nature. I refuse to be judge or jury on anyone and there decision. I do know what FTD'ers are going through. I've had FTD for 10 years and have been driving. I know it's the right and responsible decision for me no matter how drastic or inconvenient it will be to my life. </span></span></b><br />
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<b><span style="font-size: large;"><span style="font-family: Verdana, sans-serif;">(Thinking about a moped or </span></span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>motorcycle?)</b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I play the same mind fucking games all of FTD'ers do. Avoid the highway. No long trips. Cut back my driving. Drive only where I'm familiar with. Drive only a few miles a day and just to the store or restaurant. The illusion of safety and doing the right thing. Then there's reality. I've FTD, it's getting worse and I'm going to need to stop driving. I follow traffic laws like any other citizen. Have my Mini Cooper and have never been cited or pulled over. No fender benders. Have killed numerous insects, though this can never be proven do to window washer efficiency. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Six months ago I moved deciding I had to leave NYC. Had to move from friends and support systems. Was told I wasn't allowed to move nor drive. I refuse to live my life in fear. Fired my Power of Attorney, moved, upon landing in Arizona went directly from the airport to the car dealership. There is no perfect place to live life with FTD. In fact life sucks with FTD everywhere, but as far as I'm concerned it's a good "sucks" here and I'll make it a good sucks anywhere. NYC is not a place one should live with FTD. Another topic for another time. What I can say is I've absolutely loved my 6 months of Mini Cooper driving. I love sitting on my balcony enjoying the 70 -80 degree weather.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">What is life without a car for Howard FTD. Closest grocery store is over a mile away. No family, no friends, no one with a car. Remember I'm the neighborhood nut. So how do I get to docs etc? Public transportation is very limited here, but I'll do what I can and bike it. I don't keep food at home and can't decide what to eat when I'm out. I now regularly choke on liquids on phlegm and liquids. Besides morning in Starbucks I avoid people because of my behavior. Assisted Living? No way. I'm not the Assisted Living type. I'm extremely well educated on AL, have visited many and have many FTD friends there. Not for me. I'm not prepared to rot away. Dying from FTD is horrific. If you don't think I'm not looking at dying with dignity, your out of your fucking mind.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Flying to NYC next week for the AFTD Conference. Will be hosting a breakout session with 23 FTD'ers on "How to make a better life after diagnosed" and addressing the General Assembly with question/answers. Am so excited. There will also be some of the top FTD specializing neurologists and medical personal in the country there. Many of my FTD compatriots from my support group, caregivers I know. Close to 300 people attending.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Will be happy to see Dr. Ted Huey from Columbia presenting. He is one of the top FTD specializing neurologists/neuropsychiatrists in the world. I met Dr. Ted Huey when first diagnosed and he got me off Aricept, which had horrible aggressive side effects. Don't know if he'll remember me, but I'm forever grateful.</span></b><br />
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com4tag:blogger.com,1999:blog-6539769365000202093.post-6671690631596946682014-03-02T09:12:00.001-05:002014-03-02T11:41:57.040-05:00 FTD Aggressiveness and Love<br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">Remember when you were a kid and there was always the neighborhood crazy person. The one you as a child avoided and made fun of. The person parents held there children closer when around and who people gossiped about. You'd pass that person and smile slightly to be polite while cringing. Possibly talk for a few seconds being mannerly and feeling sorry for them. Every neighborhood has one. We all know him, it's that guy. I'm that guy now. </span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;"><i>The neighborhood nut.</i> </span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">Awareness cards, explanations, brain disease, big fucking deal. Here I'm alone and alone is alone. Back in NY, I had friends who would sometimes explain behind the scenes my FTD'er behavior. Even then many of my friends would no longer socialize with me in public. Here, as with everywhere you try to explain FTD. Some get it, some are scared and others say "you don't look or sound like anythings wrong with you." That's the FTD curse. If they "get me" fine. If not, fuck em, next. Maybe I should join the traveling circus. under the guise of "FTD man", the man with the diminishing mind and unfiltered mouth.</span></b><br />
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<b>The the last few months have seen multiple complaints about me in the apartment community including almost a fistfight with a neighbor who followed me up the stairs to his apartment. All I know is I went to him and his wife's apartment to apologize for a behavioral issue. Next thing I know we're almost at blow's. It's beside the point him and his wife are a couple of assholes. This is the third time in 6 months I was teetering on the edge of a slugfest. Once after cursing out an 85+ year old woman at Costco. Wasn't even aware I did something wrong, till there was some big 30 year old in my face about it.</b></span><br />
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<b>Do I have a history of violence? Last time I got into a physical altercation I was 13 years old. Gave David a black eye and we're still friends now 43 years later. Never been arrested, though have killed my fair share of NYC cockroaches. My behavior has gone downhill. Why? I have bvFTD (behavioral) you assholes. I now have a flash/anger problem. I could be fine and within a flash of the wrong statement, I'm in anger mode. It's always verbal and anytime it's gone towards the physical, it's been at the behest of the other person. I would say the chances of me starting a physical altercation are still about as much as me winning an Olympic medal for woman's ice skating. </b></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Many FTD'ers are similar to me with flash/anger viper tongues. FTD - Incurable, untreatable and unstoppable. The best I can do is drink a bottle of $2.99 Trader Joe's wine at night to relieve myself of the living hell known of what happens in my life with FTD. Some FTD'ers are on antipsychotics like Seroquil or other meds to help combat FTD symptoms or make them easier to live with. We all have our choices and do as we must. No right or wrong in this. I like my head clear and am on no meds for FTD. Spent 6 years in a medically induced fog while misdiagnosed as bipolar. I'm losing my mind and am going out aware of it.</b></span><br />
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<b>Will my aggressive behavior continue to get worse? I've absolutely no idea and as with any of the smorgasbord of FTD symptoms, they come and go with no rhyme or reason. I'm sure frustration and difficulties of living with a degenerative brain disease contribute. No question progression has speeded up. Have been having issues choking on water and liquids. Used to have that rarely, now more frequently. Friends have written me suggestions which I keep forgetting. Head up, head down, breathe, don't breathe. Not a clue, but I'm really not worried about drowning while drinking a glass of water. A couple of people have suggested a speech therapist. Right, that's for people with money. I'm not starving, but I've no money for the extravagances in life like specialized medical care. </b></span><br />
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<b>So what do I do to address my FTD aggressive symptom? I spend more and more time alone. Don't isolate or hermitize, but behavior modification needs to be addressed. Avoid people for the most part, except a few I banter with at Starbucks. I avoid major trouble that might have me wind up in Assisted Living. Oh, excuse me. Those with behavioral issues usually wind up in a secure dementia facility. Sorry, not for Howard. When the times right I'd rather grab a bottle of wine, head out for a walk in the Arizona desert and become rattlesnake food. </b></span><br />
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<b>So was that was a pretty good FTD rant?</b></span><br />
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<span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;">Aggressiveness is just one of the </span></b><span style="font-family: Verdana, sans-serif;"><b>wonderful revolving door of symptoms we with FTD face and combat daily. My symptom smorgasbord includes non-stop incessant chatter or FTD blabbermouth syndrome, hypersexuality, insomnia, sensory overload overstimulation to noise and crowds, eating disorder, impaired judgement and reasoning, exhaustion and memory impairment that's probably causing me to forget what I'm forgetting. </b></span></span><br />
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<span style="font-size: large;"><span style="font-family: Verdana, sans-serif;"><b>Yes, I laugh and still manage to have a good time and make the most of a life gone awry. Has my life gone awry? No, life is life and sometimes life turns to shit. I consider my life "Good Shit Mon." Pretend there was a Jamaican accent to that. Laughing is my weapon for battling FTD's Number One Enemy: Depression. So far I'm kicking depressions ass. That pesky parasite is just not allowed back into my life. Lifetime ban. </b></span></span><br />
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<b>So what do I do? Just keep living life. Find happiness and purpose every day. Get my ass up and out to Starbucks 7 days a week, like I've been doing for the last 2 years. Keep my routine in tact and keep on keeping on. A few hours in Starbucks and I'm usually exhausted at home till the next day. <span style="color: blue;"><i>But I did something and that's huge.</i></span> I showered, shaved and got the fuck out the door. I got out and maybe I blogged, wrote, bantered or just checked out nice butts. In FTD world, this is as major accomplishment that one can sometimes only pray for. </b></span><b style="font-family: Verdana, sans-serif; font-size: x-large;">Faced the FTD monster that sucks the life out of you and won. One day at a time we fight, one day at a time we win.</b><br />
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<b>Where there's Yin, there's Yang. Yang comes in the form of my new girlfriend Terri. Life and love goes on even in dire health circumstances. FTD rips apart families and relationships. Many find themselves sick and alone. Even with FTD life and love goes on. Many, yes many with FTD in my FTD Patient Support Group magically found love back in there lives. Some have even gotten married. Love finds a way. Terri and I see each other once a week on average and Terri knows I don't want another caregiver. Yes, she does help me and I'm appreciative, but it's not and will not be a caregiver relationship. </b></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Terri contacted me over a year ago </b><b>about FTD. One of thousands of request for information I receive. At the time I was living in NYC, had a girlfriend and moving wasn't even in the thought process. Life happens and I wound up in Arizona. Of course I checked Terri out on the web and she was hot. Yes, I've FTD but am also a man which makes me a genetic asshole by birth. One day out of the blue, sent her an email asking her out on a blind date. She was shocked, but said yes.</b></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Terri's in the medical community and works in a Psychiatric Hospital doing assessments, discharge planning etc. She understands FTD and has worked with FTD'ers. I might be losing my mind to FTD, but I'm still a lot of fun and we both share our mutual dedication of hard, challenging work. We're companions, buddies, friends, lovers and have a deep mutual respect for each other. Both of us have been around the block of life. Terri's attitude is she would rather have a "short, spectacular relationship with me, than a long mediocre relationship." We both know I've FTD and where that road that leads. It is what it is and we have what we have. What we have is good. Terri is incredibly supportive and does the best she can when I'm having those FTD moments. What more can I ask. She wrote to me, "Guess I'm an FTD girlfriend-in-training" after a small FTD induced spat. I'm a lucky guy and realize it.</b></span><br />
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: large;"><b><i>I consider every date our first date and treat it as such with the excitement and passion it deserves. </i></b></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>I promised Terri never to get complacent in our relationship. I bust my ass doing the little and big things to make sure she knows she's loved and appreciated. I've FTD and take nothing in life for granted. Apathy can take a hike. I'll kick it's ass to. Last Monday, I randomly dropped off roses for her at work. Yep, I FTD'ed her. Left it down by the main desk for her. She later sent me the above pic of them on her desk. In turn Terri is funny, sassy, intelligent, loving and incredibly loyal. </b><b>I fight like hell to keep my symptoms in check for our relationship, but I've that good old FTD diminished filter which leads to hilarious moments or not. Last</b><b> week while out at dinner I announced out loud the baby at the next table should be duct taped. How about dem Yankees?………</b></span><br />
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com9tag:blogger.com,1999:blog-6539769365000202093.post-21413709574605671512014-02-17T12:27:00.001-05:002014-02-17T15:18:20.293-05:00"Ask the FTD Patients" group<b><span style="color: blue; font-size: large;">I treasure the good times and nice surprises in life now. Received this from the U.S. National Library of Medicine asking permission to include my FTD blog in it's collection. I'm humbled and honored that my work will be archived and made available to help those now and in the future. </span></b><br />
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Dear Mr. Glick,<o:p></o:p></div>
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The U.S. National Library of Medicine (NLM) is building an online archive of Web content as part of its mission to collect, preserve, and make available to the public materials that provide information in medicine and public health, and document their histories. NLM wishes to include your blog, available at<a href="http://earlydementiasupport.blogspot.com/" style="color: purple;">http://earlydementiasupport.blogspot.com/</a>, in this collection.<o:p></o:p></div>
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We are requesting permission to use Web archiving software to make an archival copy — essentially a snapshot — of how your site appears over time, and to make the content available to researchers through NLM. Including <span style="color: #333333; font-family: Georgia, serif;">FTD/Dementia Support Blog</span> in this online archive will greatly enhance the value of the Library’s collection. <o:p></o:p></div>
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Thank you for your time and attention in this matter. We would greatly appreciate your reply verifying your approval. Please feel free to contact us with questions. <o:p></o:p></div>
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Warm regards,<o:p></o:p></div>
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<b><span style="font-family: 'Bradley Hand ITC';">Sandy<o:p></o:p></span></b></div>
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<b><i><span style="color: #512373; font-family: 'Times New Roman', serif; font-size: 12pt;">Sandra Taylor<br />Digital Manuscripts Technician<br />History of Medicine Division<br />Room 38/B2E21<br />National Library of Medicine<br />8600 Rockville Pike, MSC 3819<br />Bethesda, MD 20894<br /><br />The National Library of Medicine is part of the National Institutes of Health, U.S. Department of Health and Human Services</span></i></b><b><span style="color: #512373; font-family: 'Times New Roman', serif; font-size: 12pt;">.</span></b></div>
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<b><span style="font-size: large;"> </span><i><span style="font-size: x-large;">Announcing a new FTD online group </span></i></b></div>
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<span style="font-size: large;"><b>"Ask the FTD Patients" is a Facebook group made from the </b></span></div>
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<span style="font-size: large;"><b>80+ patient members of the FTD Patient Support Group. The purpose is to answer questions from caregivers, loved ones and the medical community. </b></span></div>
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<span style="font-size: large;"><b>FTD is a rare disease and it's so tough getting answers and understanding behaviors, medications and diagnosis's. We are hoping that we who are diagnosed can contribute and help those in the FTD community gain further knowledge through our first hand experience and give back to society.</b></span></div>
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<span style="font-size: large;"><b>Participating are patients with all the FTD variants and all types of living situations. Some live alone, with family or in assisted living. We have experience on medications and the medical community. All of us have some degree of awareness and insight and all have firm FTD diagnoses with scans. </b></span></div>
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<span style="font-size: large;"><b>"Ask the FTD Patients" is a 'questions only' group and not a support group for venting. All questions are screened by moderators and administrators who are people diagnosed with FTD. To join, just type in Ask the Patients in the blue Facebook search bar.</b></span><br />
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<span style="font-size: large;"><b>Here is a link to join Facebook. You can use a fictitious name.</b></span><br />
<span style="font-size: large;"><b><a href="https://www.facebook.com/r.php?locale=en_US">Facebook signup</a></b></span></div>
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<span style="font-size: large;"><b>The sole purpose of this group is to help others and further awareness of FTD.</b></span></div>
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<span style="font-size: large;"><b>Howard</b></span><br />
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Scottsdale, AZ 85251</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com2tag:blogger.com,1999:blog-6539769365000202093.post-36004060549536581732014-01-28T10:43:00.002-05:002014-01-28T12:32:23.402-05:00 Inappropriateness<div style="text-align: center;">
<span style="color: #274e13; font-family: inherit; font-size: x-large;"><b>You Are Not Alone!</b></span></div>
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>--------------------------------------------------------------------------------</i></span></b><br />
<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i><br /></i></span></b>
<b><span style="font-family: Verdana, sans-serif; font-size: large;">Really upset last night. Drank a bottle of $2.99 Trader Joe's wine. Hurt someone yesterday and kept having a vision of her face. Was at Starbucks in the afternoon for round 2. Sbux was empty with no line. One of the workers who I to friendly with had her back to me. A little while passed and I made an unnaturally loud Uh, huh. She turned around smiled. When she arrived at the register I told her I told her I shouldn't have called her because I was really enjoying looking at her ass. Can't put into words the hurt and shock on her face. Can't describe the visceral reaction this had on me. This is a young, early 20's elementary school teacher that worked Starbucks as a second job. Rare I use FTD Awareness cards, but pulled one out of my wallet. Explained FTD to her and she understood. Explained I'm sick and not aware what I'm saying is wrong and hurtful when I say it.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">The revolving door of FTD symptoms stops when you die. Can't tell you the amount of nights in NYC I awoke, awoke crying. Affected by what I said during the day. Not knowing or recognizing the person saying disturbing things and acting inappropriately. No longer knowing the person that's me. Being awake can be a nightmare. I haven't gotten better since NYC. I'm losing my awareness and getting </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>apathetic. Sitting here numb and in shock. Doing the best I can to live a happy, productive life while I'm losing me to FTD.</b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Was told by someone that I've just about stopped cursing both in public and in my writings. Yippee. Wasn't aware and couldn't care less. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">To die quickly from FTD or slowly from FTD? People tell me I'm lucky. Not feeling so lucky right now. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Heading home now from Starbucks. 9:10am. My day is over. Living this life, writing this blog. Not sure what to think anymore. Just hoping this blog helps further awareness of FTD. That's what it's all about……...</span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b>
<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Scottsdale, AZ 85251</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com2tag:blogger.com,1999:blog-6539769365000202093.post-74638173002898320922014-01-23T10:32:00.002-05:002014-01-24T07:09:00.148-05:00AFTD Education Conference 2014<div style="text-align: center;">
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<b><span class="Apple-style-span" style="color: blue; font-family: Verdana, sans-serif; font-size: x-large;">The Annual AFTD Conference </span></b><br />
<b><span class="Apple-style-span" style="color: blue; font-family: Verdana, sans-serif; font-size: x-large;">White Plains, NY </span></b><br />
<b><span class="Apple-style-span" style="color: blue; font-family: Verdana, sans-serif; font-size: large;">(just outside NYC)</span><span class="Apple-style-span" style="color: blue; font-family: Verdana, sans-serif; font-size: x-large;"> on March 14, 2014.</span></b><br />
<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">(10am-6pm. AFTD social event following meeting)</span></b></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Caregivers, medical personel</b></span><b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;"> as well as patients are invited to the conference. Last year we had about 12 patients attending. Many are signed up so far this year. </span></b><br />
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;">Learn about the disease that has affected our lives and families. Learn new ways of coping, strategizing towards the future and find out the latest efforts towards a cure from the best FTD specializing medical minds in the country.</span></b><br />
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;">Since FTD is such a rare disease, this is an opportunity to see your not alone and learn different tecqniques of dealing with FTD. </span></b></div>
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;">I will be co-hosting a session for those diagnosed with FTD: "Making a New Life After Being Diagnosed."</span></b><br />
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;">Besides being educated this will be an excellent conference to network and help set up new support groups for patients and caregivers.</span></b><br />
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<b><span class="Apple-style-span" style="font-family: Times, Times New Roman, serif; font-size: large;"><i>I will be organizing a separate informal dinner for just patients and there companions Thursday March 13th at 7pm close to the hotel. We have 13 signed up for that dinner so far. Please email me at <span style="color: blue;">howardglickftd@gmail.com</span> to add yourselves to the reservation.</i></span></b></div>
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: x-large;">Here are the links to the Conference and the agenda:</span></b><br />
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<b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;"><b><span class="Apple-style-span" style="font-family: Verdana, sans-serif; font-size: large;"><a href="http://www.theaftd.org/about/aftds-2014-education-conference-and-annual-meeting">2014 AFTD North American Education Conference Information Link</a></span></b></span></b><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b><a href="http://www.theaftd.org/wp-content/uploads/2009/03/Travel-Grant-cover-letter-and-application-1-14.pdf">Respite Grants for Travel</a></b></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><a href="http://www.theaftd.org/wp-content/uploads/2013/11/conf-flyer-2014.pdf">Conference Agenda</a></span></b><br />
<b><br /></b><b><span style="color: purple; font-family: Verdana, sans-serif; font-size: large;">Shuttle from LaGuardia or JFK airports. </span></b><br />
<b><span style="color: purple; font-family: Verdana, sans-serif; font-size: large;">Red Dot Shuttle 800-673-3368</span></b><br />
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<b><span style="color: #4c1130; font-family: Verdana, sans-serif;">Where:</span></b><br />
<b><span style="color: #4c1130; font-family: Verdana, sans-serif;">Crowne Plaza - White Plains</span></b><br />
<b><span style="color: #4c1130; font-family: Verdana, sans-serif;">66 Hale Avenue</span></b><br />
<b><span style="color: #4c1130; font-family: Verdana, sans-serif;">White Plains, NY 10601</span></b><br />
<b><span style="color: #4c1130; font-family: Verdana, sans-serif;">914-682-0050</span></b><br />
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<span style="color: blue; font-family: inherit; font-size: x-large;"><b>You Are Not Alone!</b></span><br />
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<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
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<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Scottsdale, AZ 85251</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com1tag:blogger.com,1999:blog-6539769365000202093.post-24768166242176427162014-01-20T11:59:00.000-05:002014-01-20T18:07:18.821-05:00FTD Apathy<div class="separator" style="clear: both;">
<b><span style="font-family: Times, Times New Roman, serif; font-size: large;"><i><span style="color: #274e13;">* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at </span><a href="mailto:howardjglick@gmail.com"><span style="color: red;">howardglickftd@gmail.com</span></a><span style="color: #274e13;"> to join.</span></i></span></b></div>
<b><span style="color: #274e13; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<span style="font-size: large;"><span style="font-family: Verdana, sans-serif;"><b>Going into 2014 I need to realistically assess what I can accomplish. No time to mourn what skills I've lost and am losing. I've the desire to forge ahead, be productive and keep living an awesome life.</b></span></span><br />
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<b><span style="color: red; font-family: Georgia, Times New Roman, serif; font-size: large;"><i>Doing my New Years 3 step FTD red sneaker dance. 3 restaurants, in/out of each within seconds. Then home to wine and 11pm bedtime.</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Heart wrenching pain. My kids left a couple of weeks ago and I think about them constantly. I think how they said how emotionally distant I was. They also noticed and told me it was the biggest change they noticed in me from the previous year. I think about how I no longer love or have feeling like I used to. I have to dig deep and fight for love and feeling. It's still there and needs to be awakened. The quality and type is different, but I'm in touch when told. FTD and apathy. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif;">They visited for a week. I noticed a picture on Facebook of my friend Marc, hugging his son Juno and realized I kissed and hugged them once. That was days before at the airport when I picked them up. I immediately went and hugged and kissed both of them. Made it a priority to hug and kiss them frequently from that point on. Stuck it in my diminished brain routine, like going to Starbucks each morning. Yes, I felt the emotion and the love, but it doesn't come naturally. I need to somehow be made aware and work on it. </span></b></span><br />
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<b><span style="color: blue; font-family: Verdana, sans-serif;"><i>Can't describe the crushing feeling of fighting and losing the FTD battle to keep feelings that make humans human. </i></span></b></span><br />
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<b><span style="font-family: Verdana, sans-serif;">The picture of my friend Marc brought me back to reality. This insidious disease called FTD is stealing my life away. Even when with them I felt distant, but a kiss and hug brought back those feelings. They were younger when I started showing symptoms and was so out of control being on up to 17 pills a day and placed in a medically induced fog. Never got to teach him father/son things when he was younger. I sit here feeling like shit because I wanted to teach my son about basketball, baseball and football while he was during his visit. Even recorded it to teach him the rules. He's 15 now. I never did. Fell headfirst into the apathetic, lethargic way of FTD and it never got done. Spent to much time alone in my isolated FTD state while they were here. Have been thinking and dreaming of having him come for a father/son weekend of just sports. </span></b></span><br />
<span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;">Can't afford to do it, can't afford not to. </span></b></span><br />
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<b style="font-size: x-large;"><span style="font-family: Verdana, sans-serif;"><br /></span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>I've no food at home. We laughed how hunger got them out the door. I did explain to them in the month prior I was sick for almost a week. Stomach cramps and much bathroom time. Thought I had a stomach virus till I bought new milk for my Cheerios. It tasted different. The milk I was using was spoiled. Have to love FTD.</b></span><br />
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<span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;">They've struggled through the train wreck of FTD and are making it. Been a rough ride. There mom deserves much of the credit. </span></b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Yesterday was NFL Football playoff games. Have been bouncing around since I moved to Scottsdale, AZ trying to find a comfort zone. Most of the time I'm alone. People are okay in short doses. Can't keep track of conversations when I'm in a group. Get lost and hear all background noise and conversations around me. Sunday mornings I hang with the Starbucks weekend warriors. Always a couple of hours of fun and enlightening conversation from an assortment of characters. The leader of the band is a retired political/government crustacean who is opinionated, forthright and funny. Jeffrey and his wife are polar opposites and the perfect couple. Had an interesting head injury/dementia conversation with former NHL player Perry Anderson. Not being a hockey fan, I had to Google Perry who an "enforcer" in a long career. You couldn't meet a nicer, well spoken man. Have met many sports pro's since I moved here and have really been enlightened as to true cost our entertainment is to there health. I always leave the weekend encounters like I just starred in a "Seinfeld" episode. I try to keep low key on the FTD thing. You know me, once I get started I don't stop. Trust me, not a day goes by where there aren't new victims to my FTD awareness crusade. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif;"><br /></span></b><span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;">I left Starbucks and went to 4 different places trying to figure out a Sunday football lunch. In the end went back to one of the places I already had been to and got a cheap Mexican Burrito. Need to get back on my salad and wings 7 day a week routine. Healthier, cheaper and keeps confusion out of my life. Sort of like Albert Einstein wearing the same black suit all the time, so he had more time to focus on the world at large. Went out late afternoon to watch the Seattle Seahawks football game at my "Wing" place called Stax. Was excited about the game. Placed my order as soon as I entered. Stax is quiet and not a sports bar. The noise level to me is </span></b><span style="font-family: Verdana, sans-serif;"><b>deafening. Didn't even make it 10 minutes. The owner knows me/FTD. Asked him to make the order to go and waited outside in my Seahawks jersey.</b></span></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Have been having many issues with blogging and other work because I've been having brain to keyboard difficulty. My girlfriend figured it out. FTD - The land of diminishing skills. We're figuring out options for moving forward.</b></span><br />
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<span style="font-family: Verdana, sans-serif;"><b>Yes, Howard has a new girlfriend. Intelligent, beautiful, sassy, incredibly supportive and funny. She is in the medical field and quite familiar with FTD. Soon out of the gate we had a huge misunderstanding. It was an "FTD" thing. The next morning I received a text from Terri stating </b><b>she's realizes she's an </b><b> </b></span></span><br />
<span style="font-size: large;"><span style="font-family: Verdana, sans-serif;"><b>"FTD Girlfriend-In-Training". l almost peed myself.</b></span></span><br />
<span style="font-size: large;"><span style="font-family: Verdana, sans-serif;"><b>More to follow…………..after all, you are an </b></span></span><br />
<span style="font-size: large;"><span style="font-family: Verdana, sans-serif;"><b>"FTD Audience-In-Training".</b></span></span><br />
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<span style="font-size: large;"><span style="font-family: Verdana, sans-serif;"><b>Howard</b></span></span><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com6tag:blogger.com,1999:blog-6539769365000202093.post-378306342455022332014-01-06T13:18:00.001-05:002014-01-13T09:28:43.654-05:00FTD: What about the Children?<div class="separator" style="clear: both;">
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Off we go into the New Year. The end of the year I tried changing my routine to somehow force myself into "book writing" mode. Seems like every year I change around my routines that work and wind up grinding to a halt. I just redecorated Starbucks and brought it back to pre-holiday Howard FTD comfort level. Back in the captains chair and off in the right direction. No more running around going crazy trying to find a comfortable place and alter what works. Next time you read that I need to alter my routine to be more productive, please give me a swift kick n the buttocks or a baseball bat hit to the head. Knock some sense into me. Everything I'm doing is getting done in it's time. Yes, "All in good time, my pretty."</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Seeing my kids was wonderful. I want to thank those of you that sent gift cards and cash. It helped tremendously and I'm deeply appreciative of the help. My kids are 15 and 20. They were 5 and 10 years old when I started showing symptoms. We often hear from spouses about the devastating changes that happen when FTD strikes, but our most important commodity is our children. How does FTD effect them and there lives? Nothing short of devastating. FTD is bad enough, but being misdiagnosed and drugged up out of my mind by a vacant medical community made things much, much worse. I've few memories from back then, probably better that way I'm told. I was hoping to film my kids for the documentary, "Howard's Brain" and have them discuss what it was like back then. At first they agreed, but then right before we were to film, they said no. To many painful memories that they didn't want to relive. Guess I was being insensitive in not asking that from the beginning. My daughter brought up how I ruined her Bat Mitzvah and how she didn't speak to me for a year. My son didn't even have one. My behavior was so bizarre and disturbing in my actions towards them and how off I was. Can't tell you how vacant I feel now missing them growing up and now sort of being an outsider. I know I'm not, but I'm distant and one week a year isn't enough to pull things together. Not even sure if frequency of visits would help this. I fight like hell to keep keep FTD symptoms at bay and overcome them with alternate actions, but there's only so much I can do. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Asked them at the end of this trip if they noticed anything different about me since a year ago. They both agreed that I'm more emotionally detached. That's the main thing they noticed over last year. I know it. I know it and it hurts like hell. Would love to write here a solution, an action or problem solver. Sometimes in life there are no answers or solutions. I can only hope to see my kids more in the future and become closer and have a further understanding. FTD sucks. My children also noticed I've more energy than last year. I explained to them because I no longer take Namenda/Memantine for FTD. The last 2 pills (Aricept/Namenda) the medical community recommended I take for FTD are now on medications to avoid with FTD list. Maybe someday the medical community will get it's shit together with FTD. Right now the medical community is on my "avoid" list. No question I'm doing better without there ,"No answer, pretend answers." Come out with a cure and I'll be first on line, otherwise don't call me, I'll call you.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">AFTD is addressing the issue of kids with an FTD parent. AFTD will be launching a new website………..</span></b></div>
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<b><i><span style="font-size: large;">AFTD Sharon Denny:</span></i></b><br />
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">AFTD is developing and exciting new website for kids and teens who have a parent with FTD. We will begin to populate the site prior to its launch in Spring 2014. Children (ages 12 and under) are invited to submit a personal story, poem or work of are about their experience to be featured on the site. For more information email: kidsandteens@theaftd.org. (Submissions from teens with be requested soon.</span><br />
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<b>AFTD also has the booklet available, "What about the Kids?" The full booklet is below and your can order it or quantities from AFTD.</b></div>
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<a href="http://www.theaftd.org/wp-content/uploads/2009/03/What-About-the-Kids-web-version.pdf"><b><i><span style="font-size: x-large;">"What About the Kids"</span></i></b></a></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Will be blogging again soon. It's been a while and this is a new start. At this very moment I'm feeling tremendous pain of loss of family, loss of a life that has been decimated by FTD. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I plan to articulate my life with FTD. Both here and in my book. I constantly read from caregivers and the medical community how FTD patients are acting, behaving and feeling. I intend to keep explaining what's in FTD patients heads.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">We've a lot of work to do………………</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<span style="color: blue;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:</b></span></span></div>
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<span style="color: blue; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com7tag:blogger.com,1999:blog-6539769365000202093.post-74402933834107173102013-12-04T11:16:00.000-05:002013-12-08T03:55:47.313-05:00FTD and Inappropriate Behavior<div style="text-align: center;">
<span style="font-family: Calibri, sans-serif; orphans: 2; text-align: -webkit-auto; widows: 2;"> <span style="color: red; font-size: x-large;"><b>“Vote for FTD/Dementia Support Blog in Healthline’s Best Blog Contest. Find my blog on page 9 of the Alphabetical list:</b></span></span></div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">A few days ago I was at my original Starbucks and was hanging around with some of my cronies. One guy out of the blue told me he's read my blog. Declared I'm high functioning, he knows dementia and I'm not a fair representative. His manner was rude and challenging. I didn't bite. Been there, seen this movie before. I looked at him and the theme from the movie "Deliverance" popped into my head. He could've starred in the movie the way he kept himself. This is something everyone in the FTD world is familiar with. Yes, I consider myself high functioning, but have FTD and I'm going through the dementing process. Yes, I'm slowly losing my mind. Things are constantly getting more difficult and they will never get easier. There's many reasons many with FTD isolate themselves and stay away from people. It's hard to convey the hurt people with FTD go through when treated this way. You get treated like a child by family, many friends disappear or don't know how to deal with you. Everyone with Dementia has heard, "Oh yea, I forget things to. Ha ha. I must have Dementia to." There's no words to describe the incredible frustration and hurt these words cause to all that suffer dementia. We usually just stand there grinning sheepishly. What else can we do. People just don't get what it's like to be functional and then start losing your mind. There are no meds, there is no reversing it. One way trip baby. To be fair, the people that say, "I forgot that, therefore I……... are well intentioned. There just not sure what to say. If your reading this, I'm making you aware. Don't say it, it's inappropriate and hurts anyone with any type of dementia. </span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;"><br /></span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">Spoke with one of my NYC doc friends who quickly nicknamed him Swamp Guy after I described him. I laughed, that's him. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I went silent after Swamp Guy said that to me. Though his dress and mannerisms are consistent of someone who lives in a swamp, by profession he is a nurse. I had a bit of PTSD. Memories flooded of a visiting nurse back in NYC. I was freshly diagnosed and had a home nurse visit. The nurse had a translator. She had a strong foreign accent and the translator was to translate her language into Spanish for other clients. The nurse spoke broken english. I tried to explain FTD to her for the longest time. Like 98% of the people in the medical community, she'd never heard of FTD. She looked at me and said, "I smart, I masters ". Guess she was trying to tell me she was well educated. Okay, whatever. She then went on, "I know Dementia, you no Dementia". The translator looked horrified how Idiot Nurse was talking to me. I was speaking slowly and really trying to explain. Enough, I stood and told both Idiot Nurse and translator to pick up there shit and get the fuck out of my apartment. I was yelling at Idiot Nurse the whole way out the door. Like all professions you've fools who've limited knowledge. I commend Swamp Guy on the profession he haas chosen, unfortunately, having a bit of knowledge does not entitle you to be an ignorant rude fool going through life like the Tin Man before he received his brains. The way Swamp Guy carries himself and acts, he's an absolute disgrace to the medical community for which I've much respect. Swamp guy, If your reading this I've always liked you. Still like you with your inappropriate behavior and by the way, Fuck You!</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I do need to thank Swamp Guy. Looking at him, made me want to look good. Having lost 43 pounds I now fit into my old wardrobe of nice shirts and clothing. I'm now putting on nice clothes each day as part of my routine. I'm going to continue to control what I can for as long as I can and bust my butt to live a happy, purposeful life. Thanks to Swamp Guy I'm looking good. So, thank you Swamp Guy and by the way, Fuck You! </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Today is a milestone. First time since I've moved to Arizona I've broken my routine and not gone to Starbucks by my apt. 7 days a week, every week. Haven't missed a day missed. Have been stifled by unproductively as of late and needed to make a change. Living successfully with FTD/Dementia for as long as you can is routine, exercise, minimal stress and lady luck on progression. I do everything I can to stack the odds in my favor and stick to my routine. My favorite place on the planet is Sedona, AZ a short distance, yet I've yet to break my routine and leave the Phoenix area or my morning routine Starbucks. A simple change can throw someone with dementia for a loop. Two weeks ago I arrived around 6am at Starbucks to find it redecorated. All the chairs and furniture were moved around to accommodate there Christmas sales of additional retail products. Spoke to the manager who assured me they will change it back after New Years. I've been struggling where to sit ever since. I feel like I'm playing musical chairs with a blindfold on. The music goes off and I can't see where the chairs are. So I sort of hang around aimlessly moving from one chair to another. Enough is enough. Have been uncomfortable and unproductive for weeks now. Routine needed to be changed and behavior modified. Normal logic dictates it's no big deal, just go somewhere else. For someone with dementia, anxiety creeps up with uncertainty. I'm now at a different location. May not seem like a big deal, but for someone trying to keep Humpty Dumpty together with elmer's glue, it is. Guess I'll see how it goes.</span></b><br />
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<span style="color: blue;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here. All help is deeply appreciated:</b></span></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com9tag:blogger.com,1999:blog-6539769365000202093.post-82761086776638525702013-11-29T11:55:00.003-05:002013-11-30T08:46:21.841-05:00FTD Demented Thanksgiving<div style="text-align: center;">
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<b><span style="font-size: x-large;"> <span style="font-family: Arial, Helvetica, sans-serif;">Mayo Clinic Black Friday special. </span></span></b></div>
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<span style="color: red; font-family: Arial, Helvetica, sans-serif; font-size: x-large;">Buy one PET Scan, get one Frontal Lobotomy Free</span></div>
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<b><span style="font-size: large;">There's good luck and bad luck. I've no luck. Would you believe I don't qualify because I have FTD. The nurse saw the huge disappointment on my face. I waited all night for this once a year "Black Friday" special. She told me I should be happy. FTD is a free Frontal Lobotomy without Surgery. "FTD au natural" she beamed. I smiled back meekly. Yep, guess I'm just an unappreciative, self centered asshole. The nurse felt bad for me and offered me a free Lumbar Puncture if I'd have the PET scan done. What's a Lumbar Puncture I enquired? Sounds like fun. She explained it used to be called a Spinal Tap, but they changed the name so they could bump up the price. She proudly explained how the medical community followed the Starbucks concept. Starbucks changed the name of chocolate to mocha and doubled the price. Mayo did the same. Spinal Tap to Lumbar Puncture. The rest of the nation did the same. Mayo is a true leader in the medical community. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Thanksgiving Day. Knew I'd be alone and am absolutely exquisite with that. Of course I missed being with all my friends in NYC, but life is tradeoffs. I knew days like this were coming, but I also know they'll be over. Mindset baby. I will not get down or depressed. Just not going to happen. I'm living here in Arizona, riding my bike, driving my car and enjoying being out in the 73 degree sunny weather. Can also sort of afford to live here to. Can't do anything about living in the land of the diminishing mind of FTD, but can keep my mindset positive and make sure every fucking day is good or great. I will not be fucking deterred on my mission of finding Happiness and Purpose in life. My FTD symptoms and issues I now blow off. Nothing is going to get to me. I'm living and loving life. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Spent the morning with some Starbucks cronies. Everyone discussed there Tday plans. Yea, it sucked and I felt a void, but onward I roll. Also had trouble following cross conservations. FTD baby FTD. I live on planet earth and can't isolate. I'm much better with one on one, but can't give eviction notices to every one on the planet. Guess I need to deal with all you Normies :-) So I listen and try to keep up and absorb. Of course no realizes us FTD'ers are experts at making it seem like we're following. What am I going to interrupt every 2 minutes with, "Uh, excuse me but I'm not following because I'm losing my mind". Normal FTDness. Onward we forge. Let it all go and keep fucking going.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Met an absolutely </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>remarkable woman. Have had light, intermittent contact through the world of FTD for close to a year. Now there's been first contact………………...</b></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Decided to have a good bottle of wine with salad and Turkey or some sort of meat for my festivess Thanksgiving. Went to the wine store and took the recommended Cabernet. Next food. Started looking for restaurants and grocery stores. Wanted some real food for Thanksgiving. In and out I went doing my indecision FTD wandering thing. Went on for over an hour. Finally gave up and went home. Salad and wine it was. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Watched football and popped the wine cork and had my salad with wine about 4pm. Salad was from fairly old arugula and limp celery. Who cares, the wine was exceptional. Hey, no one out there can tell me I don't have my shit together and priorities in order. Wine first, food second. Enjoyed my Thanksgiving meal. Fell asleep whenever and woke about Midnight. I woke up ravished. Absolutely starving. All I had to eat all day was that leftover lifeless salad. Opened the refrigerator. Empty. I lie. There was cold water. My mouth was salivating, I was so hungry. I started laughing out loud and shaking my head at the absurdity of the situation. Here we are on Thanksgiving Day. Most people in the country are busting at the seams and wanting to vomit. There refrigerators are full to the brim with leftovers for the week. Here's Howard Glick FTD starving with absolutely nothing in the fridge. How am I to juxtapose such life contrast. With a good laugh. Big fucking deal. Couldn't even go back to sleep I was so hungry. Have been at Starbucks since about 5:30am. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Still haven't eaten and I'm smiling. Couldn't give a shit. Being hungry doesn't bother me anymore. It's a definite Flufferfoot symptom. At least I'm still de-Walrus-ing. Left NYC 246 pounds, now 204 pounds.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Knew I was going to be alone and was okay with that. Moved here, changed my life, kids coming for Winter Break. That's life. Do the best we can and keep on trucking.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Life is what you make it. I've a wondrous life. No more mourning of the past or wants. There is today and tomorrow. Guess what? They'll both be good days. Just a bit of confusion over one issue. Should I go for the free Lumbar Puncture? :-)</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Had many friends call and text all day and night. Was deeply appreciated. Meant a lot to me. Love you all.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<span style="color: purple;"><b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here. All help is deeply appreciated:</b></span></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<span style="color: purple; font-family: Verdana, sans-serif; font-size: large;"><b>Scottsdale, AZ 85251</b></span><br />
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com0tag:blogger.com,1999:blog-6539769365000202093.post-31275461100685015292013-11-19T11:34:00.001-05:002013-11-19T12:00:56.652-05:00 FTD Holiday Survival Guide<div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Walrus Alert - Left NYC weighing 246 pounds. Now at 206 pounds. When I left NYC I was busting out of my size 38 Levis, but refused to buy 40's. Would rather walk naked than buy 40's. Now I just bought 34's at Costco. Am now on the last hole on my belt. Hey, good news is when I die they won't have to slice my death suit open in the back for me to fit into it. Should fit just fine. Whew, at least won't have to die uneasy.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Another holiday season is rolling around and I'm so thankful to be here on planet earth. The minutia in my life, I left back in New York City. I'm very sick, but I don't care. I'm living life and doing great. I'm happy about what I have in life right now, no longer mourning what I lost. Life flows and you can be a moving river or a stagnant algae filled pond, where life and air is sucked out and your choked to death. 7 days a week starts out with a chuckle, as I can never organize getting out the door smoothly. Sometimes I have to turn around 3 times to get my Alice bag. My good friend Alice in NYC taught me to carry a small bag of veggies to Sbux every day. This Alice bag is partially diluted, but it usually has carrots, pea pods, broccoli and string beans.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Every morning I have to find my backpack from the day before. Then it's like heaven. My 5 minute bike ride to Starbucks where I have my stump of the day. My Sbux buddy stumps me every day. Hard to tell if he's purposely fucking with me or happenstance. A bit of both. I'm thankful he keeps me on my toes. He asked me yesterday if the NY Jets won the day before. No, they got killed. Who did they play? Don't remember, have no idea. I laughed. Welcome to Howard's world. My buddy gets me every day. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Probably the thing I miss about NYC is the relationships I had with people. Challenging each other intellectually. FTD was just a weakness to exploit and rip me a new asshole. Try to get anything past Alice or Stephen Athineous. You'll get your head handed to you. Had to be on your toes 24 hours a day. These were also exceptional people who with there actions and the way they lived there life did nothing but make this planet a better place to live in.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Lately I've been off a bit because Starbucks has gone into Christmas mode. What that means is they changed all the seating around to accommodate there retail sales. Each morning I walk in not sure where to sit. Sort of like playing musical chairs with a blind person. Right now I'm in my FTD power chair. Uncomfortable, take no shit and just get your fucking work done chair.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Funny, to me FTD is all about luck, routine and adapting to change. A sense of humor helps.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Luck in where and how fast the FTD progression is. My heart goes out to patient and caregiver alike where of all progressions. No one has a moratorium on pain in FTD world. Doesn't matter how much time I have left. What matters is the quality of life. Howard's world consists of making a better quality of life for me and those in my world. My antidepressant is fighting FTD symptoms which is no longer a battle, but just a part of me. Was on the phone with an FTD'er at 6am this morning and told the person I had to hang up and get out the door or I may never leave the apartment. There was immediate recognition and I was out the door. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I live in the land of the diminishing mind. I'm rewired and dealing with it. It does get rough and confusing when my mind get muddled and the wires cross. I say and do things that come from a person with a sick mind. Instead of faltering, I stick to my routine and don't deviate. Won't get stuck in the quicksand of my brain and dragged away by FTD's number one enemy. That pesky parasite we call depression is out there, but I'm not buying into it. I'm not fragile and will not falter. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Getting set in a routine is extremely difficult, but what happens when that routine needs to change. Have been struggling to get my book going. Just can't seem to get it fit in. Tried to slam book writing into my routine, but that hasn't worked. Routine change has to be consistent and gradual. My morning is Starbucks, but I'm gradually shifting the rest of the day and afternoon. It is working. Fooled myself into thinking I would have more afternoon energy since I've lost 40 pounds, but that's a fools dream. I have FTD and need to rest a bit around noon. I'm now writing more and more for my book. Have eased off the pressure on myself and it's starting to flow. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">There's yin and yang with FTD.</span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">The Yin - Sat next to an 89 yr. old WWII vet. He served in San Francisco protecting the Bay area from Japanese invasion. I was a veteran of the Israeli army and there's usually a camaraderie amongst vets. He ordered food to go and we chatted. Richard outlived his wife and kids. It was sad, but he kept pushing at living life leaving his Assisted Living, driving and going to restaurants. When his togo food came I grabbed the bag and walked him out to his car with it. We talked at his car and he mentioned he might not remember me next time we meet, so I should forgive him. He didn't realize we were on the same team of diminishing brain cells. When I went back in to "Uncle Sals" I received accolades from many at the bar for helping him. Was sort of shocked, thanked them but said it doesn't bare well for our society that we're so devoid of manners. We should naturally be helping our elders and be criticizing those who aren't getting off there lazy asses with the little effort it takes. Took me about 20 seconds to go from hero to asshole. Ask me if I give a shit?</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">The Yang - Was at Costco and was loading my car with my few items and saying goodbye to a senior citizen woman who I befriended in the store and happened to be in the car next to me. Next thing a nasty, vile elderly lady in her mid-eighties told me to move my car with the nastiest tone. I don't even remember returning my FTD gesture to her with equal passion. As I opened the car door I turned to face an extremely hostile, 6'2"+ twenty something year old. Of course it escalated….. The chapter is called Vile Lady in my book. I was conflicted to post the Vile Lady incident here on my blog. Of course it ended like all my FTD altercations with end being no one hurt, but a better insight of FTD revealed. This really showed me how apathy has entered my life. There are so many wonderful and horrible pieces to my FTD puzzle. Hopefully my book will give a better understanding of FTD and help those with any type of dementia, live a better quality life.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Actually pretty excited about my book which is cruising along. I've never taken a righting course, so hopefully I'm heading in the write direction. In "I'm Aware That I'm Not Aware" you will meet some of the best people humanity has to offer, as well as the lowest scum on the planet earth.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I've no publisher, nor editor. Laughing here. A good friend in NYC might be able to help. Any ideas or help from out there would be welcome. howardjglick@gmail.com </span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">This just like when I first started my blog. Me and the keyboard, love it. Grassroots baby. When I finish it, it will be published. I'll do it if need be. Have decided to buy a copy myself so I know at least one will be sold. This will not be a tragic or depressing book. This book will be about how to live life with dementia. Everyone deserves a happy, purposeful in there life for whatever time we have left. </span></b><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>One of my main motivations is to make money so I can see my kids more often. I will see my kids for winter break in December. That's twice in 2 years. I really would like to see them more than once a year. Instead of complaining I'm doing what I can to try and make that happen. </b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">***** Need help*****AFTD was kind enough to send me 1,000's of my emails to them in the last couple of years on a flash drive. This is my daily and nightly records of life with FTD. Problem is I can't figure out how to open a new Outlook account to access them. I've a Mac and there in Microsoft language. If anyone has Microsoft Outlook experience and can help me install and open the emails, it would be deeply appreciated. I've spent hours and hours unsuccessfully trying to accomplish this. It's probably as easy as me missing to check off one box. howardjglick@gmail.com</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">It's taken me many years to learn how to handle holiday situations and I've certain strategies which now work. </span></b><br />
<span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;"><br /></span></b><b><span style="font-family: Verdana, sans-serif;"><br /></span></b><b><span style="font-family: Verdana, sans-serif;">Whenever I go somewhere I need a "quiet escape room". Before you leave for your holiday trip, arrange a room for you or your loved one can go to, to take a break. Better than leaving in the middle of Turkey dinner. Usually an hour or two is all I can take of all the noise, smiles, overstimulation and holiday cheer before I start unraveling. I start heading towards a negative place with inappropriate remarks and behaviors that I'm unaware of coming out. Rather than force whoever I went with to leave and be a total party pooper, I always make sure there's a quiet room I can escape to and lay down for however long it takes. I used to meditate, but that stopped some time ago. People know I have FTD and it's never a problem finding a safe room. I'm happy to be around friends and it doesn't matter if I miss the meal, event or whatever. I might fall asleep or just lay there quietly.</span></b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I used to just run off if possible or make make some peoples lives miserable. No more, now I head to the quiet escape room and maybe I have some time left to hang out and really enjoy myself. No matter where I go now, there's always an escape plan. I do much better at planned events. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">As far as helping cooking and preparing. If I know in advance, I can work on preparing something, but even that has it's challenges. At Thanksgiving I was asked to bring ice and dinner rolls. Instead I offered to make salad. I was told to make salad for just 8-10 people. I made it for at least 30+. It blew my budget and I wound up giving much of it away. Next year I'll bring the ice. I just have to give up things I used to do and change my way of life to coexist both with FTD and the world around me. </span></b><br />
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<span style="font-size: large;"><b><span style="font-family: Verdana, sans-serif;">If you have FTD and can no longer cook or do everything you used to do it's okay. Do not beat yourself up or try desperately to do something you can't successfully do. Accept you can't do what you used to do and find something else to do. We all want to feel useful and a part of something. Whether it's walking the dog or taking the dishes off the table, there will be a way to </span></b><span style="font-family: Verdana, sans-serif;"><b>contribute. We have a tendency to beat ourselves up. It's the disease, not us. Be useful and don't mourn about what you can't do, find something you can do.</b></span></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">When you have a progressive disease like FTD, things are going to keep changing. Expect the unexpected from yourself. I am lowering the expectations of myself and letting people know to expect less of me. That's extremely difficult constantly giving up cooking, driving, helping with kids etc. for those of us aware with FTD. If we don't give in and screw up, we usually don't care and that frustrates and makes angry the people around us. If your a caregiver, you need to realize if you get one good hour at a holiday situation, that's a good thing. Take and appreciate that. Don't dwell over years past. Enjoy the moment and wreck your normal brain over what no one can control.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Traveling with FTD for me is easy now. My Mantra NAFW - Not a Fucking Word has saved me many a time. I no longer say a word at airport security, hotels etc. After 120 flights a year and over a million miles, I'm on cruise control when I travel. It's extremely easy to get out of control with FTD. One wrong question and we're in someones face. Airports and hotels are perfect places for nonsensical questions that get a normal person crazy, never mind an FTD'er. My advice to caregivers. Drill NAFW into your loved ones head long before they travel. NAFW means ignore everything and just comply, now matter how stupid the person is in front of you.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Carry FTD Awareness cards which you can print off the AFTD website for free.</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Just try and enjoy the holidays for what they are now and don't push yourself, caregiver or patient to make it like past years. A couple of great hours is better than despair. Make the best of every moment.</span></b><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Have a wonderful Thanksgiving everyone.</b></span><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="color: yellow;">yellow </span>donation button on top of the page or my address below with gift cards, cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here:</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Scottsdale, AZ 85251</b></span><br />
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com8tag:blogger.com,1999:blog-6539769365000202093.post-64282697319455796802013-11-11T13:12:00.001-05:002013-11-11T16:52:26.202-05:00FTD Awareness, Apathy and Impulsiveness<br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">It's hard functioning knowing your reasoning, judgement and filter are off. "I'm aware that I'm not aware" of what's happening real time. Real time is not a reality in my FTD world. Being embarrassed, frustrated and totally disappointed with myself is now a commonplace occurrence Also is forgiving myself because I know it's the disease, not me. Just sitting here I'm thinking how at a new bar/restaurant Friday night I told the bartender who was wearing shorts what great legs she had. Not just a comment, but went into detail describing the curves of her calfs etc. (pic below is my realtime grimace as I type)</span></b><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: large;">My realtime grimace</span></b></td></tr>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">FTD sucks. For some reason when I do these things they have such an air of honesty that I never have had pushback. I'm also not making an advance towards woman when I do this and that comes across. Just showing an honest appreciation for there beauty or how well they take care of themselves. Never been yelled at, slapped or punched. There really just compliments gone awry. Never have had to hand out an FTD awareness card. The Leggs bartender, took it as a compliment and told me she was a former collegiate soccer player. Now she bar tends, as well as is building a finance career. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Well, just told the Starbucks girl how pretty she is with just the little bit of rouge she put on. Young and beautiful. Just a wee bit of makeup highlights her features. She's very pretty. I've told her this before along with her cute Mr. Magoo-chick glasses she wears. She smiled having no idea who Mr. Magoo was. Whether I was appropriate or not, I've no idea. I know I go into details of what and why I like or don't like something. Whether it's appropriate behavior. I don't know, nor care at the time. For you that don't know the cartoon character, you should Google:</span></b><b style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: large;"> </span><span style="font-family: Verdana, sans-serif; font-size: x-large;">Mr. Magoo</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Funny thing about awareness. You have to fight for it. I did have a "first" date a few weeks ago. Of course the beginning of dinner started me off talking about me, myself and I. Mid dinner my awareness alarm went off and at the next conceivable break in conversation I asked her to tell me about herself, family favorite area of vacation and life. She was a bit shocked and said she read people with FTD were apathetic and self absorbed. Yep, that's what the docs generally agree on and feed it like a poison to FTD'ers and caregivers. Yes, each person is on there own FTD journey, but I've seen enough FTD'ers light up and fight back for as long they can for awareness. It's simple, we're in a war against dying brain cells. How the rest of the brain rewires to compensate, well that's a theory game. In all fairness my girlfriend in NYC helped train me with awareness. When totally self absorbed and not even asking her any question about her, she'd get up and leave. This happened frequently in the beginning, but like Pavlovs dog I learned. I've also learned you have to fight every moment with FTD and more importantly, let things go and forgive yourself for what you can't control. You just can't keep fighting and questioning yourself. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;"><i><u>Weight gain and awareness:</u></i></span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">Okay, so I've turned fanatical. I weigh myself each morning with the scale being on my kitchen floor. Went from 246 pounds in NY to 209 pounds this morning. Funny, how docs keep telling you, "Yep, weight gain from carbs and sweets is an FTD symptom". Yo docs, how about suggestions on how to focus FTD behavior on methods of losing weight and taking care of yourself with FTD. Never here that from docs. We've been written off by ignorance. Each person has there own progression path and rate of decline, but there's no question you go further by using your mind, exercising and keeping your body in order. We've got a lot of fight that can be focused. Part of my morning routine is turning on the water for the shower, then heading to scale in the kitchen. Weighing myself each morning works for me. I'm committed to getting to 190 pounds. </span></b><br />
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<tr><td class="tr-caption" style="text-align: center;"><b><span style="font-size: large;">Mint Chocolate Frappuccino Samples<br /><i>Fuck that!</i></span></b></td></tr>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>------------------------------------------------------</b></span><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">A week ago was sitting with my Starbucks cronies and a senior woman with a wondrous smile and bike helmet in hand entered. She just rode 10+ miles on the bike path Greenbelt and was so excited. Bike Lady's youthful exuberance at 61 was contagious. Hold it, I live on the Greenbelt. What bike path. Have been here about 2 months and now I learn I live on a famous bike path. Thought it was just a Golf course. I decided when I hit 210lbs I was going to start working out. A couple of problems with that occurred. My hand problems and severe arthritis which even typing now is painful, plus the cost of a gym membership.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Bike Lady inspired me. As I said earlier, I try not to be impulsive in buying. I check my bank account about 10-20 times daily minimum. Haven't a clue to my finances, am bleeding, but okay for now. A bike would mean exercise and biking to Starbucks daily, as well as another activity in my routine. A few miles on the Greenbelt daily would help. Spent the 2 days after my bike lady inspiration running from one bike shop to another. Found a great bike at Landis Bikes, but the sales boy was an arrogant little shit. Wouldn't buy from that asshole or his shop. Did request and receive a nice solid business card which I used to remove bird poop from my car. Finally one shop with 1K+ dollar bikes sent me to a shop they thought would fill my needs, Bike Emporium. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">The owner of Bike Emporium was full of positive frenetic energy. You could tell she drove everyone around her nuts and all that entered her world absolutely loved her. This 30 yr. old, tiny 90lb., sassy, spunky chick was going a mile minute and loved what she was doing with her life. This was the 3rd Crystal I've met in my life and each was remarkable in there own way. Crystal took absolutely no shit and totally abused me. Of course I loved it, plus she had the coolest Canadian accent. Decided I was buying my bike from Bike Emporium. Settled. Explained to her my FTD and other deficiencies and she put together the perfect bike for me. I asked Crystal about a bell or horn and she pointed me to a large case filled with them. I picked one out and of course she told me how ugly it was and picked a really cool bell. She picked out a certain handgrip to help with my arthritis etc. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">All in all, she gave me a discount but I paid double of what I was thinking of spending on my bike. </span></b><br />
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<b><span style="font-size: large;">Crystal at Bike Emporium in Scottsdale</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Went from the bike shop to the supermarket and who do I run into at the door, Bike Lady from Starbucks. Told Bike Lady excitedly that I just came from buying a bicycle. Thanked her profusely for the inspiration she'd given me at Starbucks. She was excited for me. We small talked and parted ways.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Crystal delivered the bike the next day and showed me how it functions. My last bike was when I was 14 years old. Had it for a few days. My last memory was standing </span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;">helplessly on a NYC street as a</span></b><b><span style="font-family: Verdana, sans-serif; font-size: large;"> thief rode away on my bike.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Well, back to the bar with Leggs the bartender Friday night. There were a few people in the bar when an old crusty geezer entered. We looked at each other and there was an immediate connection. Love at first site. He said to me, "Do we know each other?' Terry and I laughed and the next half hour we we're hooting and laughing. Both of us kept commenting how familiar we were to each other. I thought maybe he has dementia as well, who knows or cares. We were having a great time and Leggs even served me a glass of wine. His kids came in and then his wife walked in. Terry went to introduce me to his wife. I sat there with my mouth wide open. It was Bike Lady. We hugged, talked laughed and told Terry how we knew each other. I then took Bike Lady and her brilliant smile out to see my bike. They parted and all were excited at what we had experienced. Terry and I were talking how we were looking forward to getting together again. Guess he frequents Leggs bar/restaurant. What an amazing world we live in…….</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Have been biking every day. Did fall twice so far. Couple of scrapes. No helmet and love the wind in my hair. Hey, not much brain left to damage there anyway. Biggest problem so far is how to lock the bike. Stood there for over an hour trying to figure if they could steal the tire or bike and how to put it on. No success. FTD sucks. A Starbucks buddy and salt of the earth political savvy Scottsdalian, Jeffrey saw my difficulty and came to the rescue. He knows I've FTD and showed my how to properly lock the bike. He reinforced it in me a few times after. Just wasn't sure…….. Maybe it was PTSD from that bike thief riding off on my bike when I was 14. </span></b><br />
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<tr><td class="tr-caption" style="text-align: center;"><i><b>Is it on right?</b></i></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><b><i>Do I have to name them?</i></b></td></tr>
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<b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The Greenbelt</span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard Glick </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Living Life. One FTD day at a time</span></b></div>
<br />Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com6tag:blogger.com,1999:blog-6539769365000202093.post-12010485469279441332013-10-30T14:50:00.002-04:002013-10-30T18:37:15.210-04:00New Diagnosis<b><span style="font-family: Verdana, sans-serif; font-size: large;">Ever feel like the universe is just fucking with you.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Ten years ago I got sick and my whole world went upside down. Never knew what hit me. Lost my successful longterm career, family, money, soulmate, friends and health to FTD. Lost everything a person could lose. There is no recovery from FTD. There are no medications or therapies to slow, stop or reverse it's progression. You will continue to lose your mind till your mind till your dead. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">What I did learn is not lay down and die, not be depressed, not mope, not feel sorry for myself and never ever give up. Whatever obstacle gets in my way, I will figure out a way to overcome. If I can't overcome it, I let it go. I forgive myself quickly for the actions I can no longer control. I believe everyone has a right to happiness and purpose. Both happiness and purpose don't just show up at your doorstep, but you need to fight for both every moment of every day. I do everything I can to help others with FTD as well as other walks of life get on the same path I'm on.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I also have learned that I've a sense of urgency that drives people crazy. I'm on the clock. That clock is FTD and it's ticking down. I've no time or patience for bullshit or lackluster efforts. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I created a new life and started over making this blog my core and expanding out from here. I've risen to become a successful writer/filmmaker amongst other things. I type and film on a daily basis. On moving day from NYC I was filming while walking up stairs and fell. Both camera and I got broke. Joe Becker, the filmmaker got me a new camera in 2 days. Wish the same could be said for my body.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">It's been about 3 months since I fell and injured my right hand. The pain and swelling have gone up and down. I've tried to ignore it but it's reached the point that even shaking ones hand has brought me to the edge of tears. I figured it had to be a broken bone or ligaments. My left hand was a wreck with 6 of 8 bones being broken or dislocated. Have been on and off painkillers for years. Since damaging my right hand, I've been forced to use my left and now it's 24 hrs. of chronic pain.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I know there's a huge stigma about the dreaded painkillers, but they are relief now. I could write an intellectual article on how Vicoden is working pain relief for me with FTD, but no time now. Found a doc and he sent me to an orthopedic surgeon. Dr. Thull was voted one of the "Top Docs" in Phoenix for at least 3 years straight. I already had the mindset that I had a ligament or bone damage and needed surgery. At one point I found myself sometimes not being able to wipe myself with either hand. Chop the fuckers off and give new me hands. I think you get the point.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Dr. Thull had the X-rays and examined both hands. Left hand beyond repair. The right hand with the extreme pain came a shocking diagnosis. Severe Arthritis and a good chance nothing will help. I was in shock. The fall with the camera brought about a condition that was there. Surgery would not help. He told me to try Aleve for 2 weeks and if that didn't work, cortisone shots, but didn't know if that would be successful.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I left in a state of shock and filmed my thoughts and reaction for "Howard's Brain" at a bar with a Diet Coke. I've busted my ass beyond belief to recreate my life and exist with FTD for as long as I can. My life consists of typing and holding the camera. My new career is now over. Now it is painful to type and I can't hold a glass of water in my right hand, never mind the camera. I'm totally devastated. The Universe hates me. Some people that have heard have wrote to me about use Dragon speech to text software. I love typing my expression and emotion. Love the sound and feel of pounding away on my keyboard. Now what the fuck am I going to do? Start a new career in crosswords and puzzles. Maybe I can become a clown.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Tell you what I'm going to do. I'm going to keep on keeping on. I'm not going to increase my painkillers, in fact I'm going to decrease them to there previous level that's helpful but not interfering with my life. I am going to keep blogging but will be cutting back. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">My new main focus will be my book, "I'm aware that I'm not aware" each morning 7 days a week. My book I believe will not only help with FTD awareness, but help anyone dealing with a chronic disease. My main focus will be my book, then my support group which helps many including me and the long term project: "Howard's Brain". Am also going to be working on booking speaking engagements. I've applications out now to various groups and Universities. Will soon have a highlight disk to send out. Don't think there's any disease that can ever shut me up.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I might be crippled by pain and movement but I'll find a way to type. I'm in pain right now. I don't give a shit. I'm sorry Mr. Universe. You better come at me with more than FTD, Cancer, Heart Disease and now Arthritis. Anything short of Leprosy with body parts falling off and I'll keep going. In fact, I'm more determined than ever. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Now I'm going to pull an FTD reversal and say thank you God and the Universe for the tools and help you've given me. In the last 2 years I've accomplished more to make a difference in others lives than I could've ever dreamed of. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I was walking in pain for 3 weeks from buying sneakers 2 sizes to small. Thank you for putting that sales guy in front of me who told me I was in pain because my feet were busting out and he replaced them. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you for having Kevin Smiley inspire me by losing 25 pounds with FTD. Up to then it's just docs saying, Yes, those with FTD gain weight from sweets and carbs. I've now gone from 246 pounds in NYC to 211 pounds this morning. Can't figure out how many pounds that is right now, but it's a lot and I'll keep going. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Thank you for giving me a firm diagnosis with my hands. I know what I'm facing and I will not stop any of my work on projects. Might have to shift a bit, but I'll keep going. There's always a way to get things done and I'll find it. I'll walk into that Valley, facing the pain and keep going. Why? Because I am the baddest mother fucker in the Valley.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
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<b style="text-align: -webkit-auto;"><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I could use help. Am on Social Security Disability with no other help. Gift cards, etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="color: yellow;">yellow </span>donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com3tag:blogger.com,1999:blog-6539769365000202093.post-31025282182262711122013-10-28T12:24:00.000-04:002013-10-28T12:24:06.257-04:00Fighting the judgment battles<b><span style="font-family: Verdana, sans-serif; font-size: large;">Was out on a date last night, a first date. Thank God for first dates, since I rarely make it to a second. Might as well be a Vampire. I'm funny, charasmtic and intelligent like a Vampire. But, do you really want to be part of my world? I've now lost 33 pounds since leaving NYC, so I might be even considered decent looking. I've had some remarkable accomplishments and really am a good guy. But, do you really want to be a part of my world. Dating me is an adventure. I've never read the FTD dating protocol book. Don't think it exists. It will have to be a chapter in my upcoming book. Probably under the heading of my new dating service D-Date or Dementia Date.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">How people handle disease is how they handle life. Life is the ultimate curveball and FTD is the pitch. I like how the previous line sounds even if I haven't a clue if it makes sense.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Last week I wrote about the sneaker incident. I bought sneakers 2 sizes to small. Didn't pay attention nor care at the time of purchase. Just wanted to get back to my writing at Starbucks. Wore them for three weeks in extreme pain. Spent a ridiculous amount of hours buying bandaids and scheduling when to put them on, adjusting the laces and even figuring how best to walk so they didn't hurt me. My reasoning and judgement are off. Didn't think at all that there was a size or fit problem.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I tried on the sneakers and took a couple of steps, paid and left. It wasn't impulsiveness as much as bad judgement. Should've walked a bit, checked the toes etc. When I returned them I was shocked when the sales guy pointed out my feet were busting out of them. The cost was $50. I've had the new ones on for days now and it's so nice not to be in pain. I would've limped around in those shoes till they were worn out I was bed bound. I'm not looking after myself the way I should. Right now my feet are perfectly fine, but typing has me in pain that would cause any normal person to stop immediately. I have slowed down with my blogs, posts and responses. My new doc had both hands and wrists X-rays. One shows severe damage and arthritis. 6 out of 8 bones have been broken or dislocated. Multiple surgeries and very limited movement now. Yes, constant pain which is worse now because of extreme pain in the other hand. So now I'm using my severely damaged hand because I can't use the other and now that both are killing me. Guess I shouldn't complain. It could be worse. I could be suffering from FTD, cancer, heart disease or flufferfoot. All diseases whose asses I've kicked in the last couple of years. Guess this is the part where I should be throwing a pity party. Tough times, eh. Two years ago I was out of the hospital after my cancer operation, alone like now and doing the wash in the basement of my NYC apartment building. My catheter was ripping my penile skin and it was bleeding. I'll take the hand pain. Hey, I'm patient, caregiver to myself and tireless awareness advocate asshole. So do I deserve a party or some common sense? I'll take the common sense. Have an appointment with an orthopedic doc this afternoon to figure out what to do. In the meantime painkillers are giving me some relief. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">The whole sneaker incident bothers me. Shows me I'm off kilter. I know it, but who likes to face it. How many sneaker incidents are there? I've no idea. Comes with the territory of having a disease that effects your judgment. I know my judgement is off, but I'm doing the best I can and will continue to do so. My main motivation behind going to docs is because I'm in so much pain typing. Typing is my life and I've a book to complete and a movie to make. BTW - Just filled up another memory card for the FTD documentary, "Howard's Brain". Can't hold the camera because of my hands, but have been using a tripod.</span></b><br />
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
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<b style="text-align: -webkit-auto;"><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I could use help. Am on Social Security Disability with no other help. Gift cards, etc. They are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="color: yellow;">yellow </span>donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b>Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com0tag:blogger.com,1999:blog-6539769365000202093.post-59211561407477430002013-10-24T12:08:00.002-04:002013-10-24T19:40:33.708-04:00Pain<b><span style="font-family: Verdana, sans-serif; font-size: large;">Bought a pair of sneakers a few weeks ago. I usually act pretty fast when people make comments. Someone sort of hinted by telling me I could put my sneakers in a bucket with bleach to refresh them. Bottoms were worn. They sort of ran away on there own long ago, so I took the 50 yard trek from Starbucks to Big 5. Big 5 is the "Staples" of sporting goods. The 10 year old customer service rep helped me. Bada Bing, Fifteen minutes later was back typing at the Starbucks table my butt is now acquiring.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">A couple of days later they really started hurting. I'm no hero, but seems my body has been crackling from pain for a while now. It's not just the pain. With FTD your ruminate on the pain, which makes it worse. I ignored it hoping the sneakers would break in. Instead my feet were getting broken in. I started putting on bandaids when my socks were getting stained with blood. Of course the story within the story was buying a box of bandaids. This included trips to "Fry's", "Walgreens" and "Walmart". What type, size, cost etc. Nothing is simple in FTD world. My morning routine now changed to include band aiding each morning. Of course it's a domino effect was now I didn't have anyplace to throw the bandaid wrapping, ends or used band aid. I've bought minimum 4 garbage cans and returned them all since moving. To tall, to small, color etc. Now I've these annoying little pieces from bandaids. Found an empty plastic bag to throw them out it. Days later I discovered my unopened meds were in that plastic bag with bandaid pieces. Hey, everyone hates those little pieces that fall on the floor etc. Can't they invent edible wrappers. The bandaids helped, but my feet still hurt and I needed to adjust how I was walking. </span></b></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Now it's three weeks or so later and I'm back in Big 5. Not because of the sneakers, but need to refresh another of life's items that wear out. I'll spare you.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">While looking a salesman asked if he could be of assistance. Since my feet were hurting I went right into how I purchased the sneakers 3 weeks ago and they hurt and are cutting into my foot. Could anything be done? Chris told me he could see by looking at them that they were way to small and stated I should've had him help me. Ridiculous. I told him someone else helped me and I came to Big 5 and paid more for sneakers not expecting experts, but a bit of help. Hey, I expect to pay a bit more, but get product that works. Otherwise, instead of dealing with brainless twits, I might as well save money and order from Amazon or Zappos. He asked if I had the receipt. No, and I told him I had dementia. I don't know if Chris realized it, but we were heading into an FTD realm of no return. This was about to get out of control and I really didn't give a shit. We went from bad sneakers to me spending $50 and getting ripped off from incompetence. Unacceptable. </span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Chris was a good manager/guy. He had me sit down. Brought out the same sneakers except 2 sizes larger. Took me to the register and made an exchange. Wearing them now. It's so nice not to be in pain. Big 5 has now earned a loyal customer instead of the worst enemy in the world. An FTD'er.</span></b><br />
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<b><span style="color: blue; font-family: Verdana, sans-serif; font-size: large;"><i>I'm aware that I'm not aware.</i></span></b></div>
<b><span style="color: blue; font-family: Verdana, sans-serif; font-size: large;">*Just wanted to say I do take total responsibility for this whole thing. If I wasn't sick, I'd have realized when I initially tried them on that they didn't fit. I wouldn't have worn them for weeks in pain. They were ridiculously tight. In fact, they were crazy tight. What can I say it's the disease, FTD. FTD causes your judgement to be totally off. *Added on after article was written.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Have been is a tremendous amount of pain lately. Both hands. wrists killing me. X-rays show extreme damage to one wrist. Had 6 of 8 bones broken/dislocated. Multiple incidents and surgeries with severe arthritis now. The other I can't hold a glass of water and it hurts to type. Have an appt. with a specialist on Monday. Have to actually use my other hand to release the emergency break. Shifting hurts like hell.</span></b><br />
<b><span style="font-family: Verdana, sans-serif; font-size: large;">Used to take painkillers, but stopped. All the public stigmas and my girlfriend used to drive me crazy. Back on them now and I have relief. I can't tell you how nice it is to have relief from chronic pain. I've a new doctor now, Dr. O'Leary is a good guy. Was interested in FTD and me. Glad I didn't have to fire another one.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Onward we forge with new possibilities opening before my eyes. Will make this blog short. Yes, I'm in pain.</span></b><br />
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">Howard</span></b><br />
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Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com2tag:blogger.com,1999:blog-6539769365000202093.post-16651033670905215202013-10-21T00:22:00.000-04:002013-10-24T09:43:42.288-04:00Alzheimer's Foundation article on FTD<div style="text-align: center;">
<b><span style="font-size: x-large;">FRONTOTEMPORAL DEMENTIA:</span></b><br />
<b><span style="font-size: x-large;">A DISEASE STILL CLOUDED IN MYSTERY</span></b><br />
<span style="color: #cc0000; font-family: Georgia, Times New Roman, serif; font-size: large;"><i>The Alzheimer's Foundation of America</i></span><br />
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<span style="color: blue; font-family: Arial, Helvetica, sans-serif; font-size: x-large;"><b>PLEASE ENJOY THIS ARTICLE ON FTD FROM THE </b></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;"><b>ALZHEIMERS FOUNDATION of AMERICA<span style="color: blue;"> </span></b></span></div>
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<span style="color: blue; font-family: Arial, Helvetica, sans-serif; font-size: x-large;"><b>I ADDED AN ARTICLE FROM AFTD AND 2 FROM FORBES. THE PURPOSE IS TO SHOW HOW PEOPLE CAN ADJUST TO LIVE WITH FTD.</b></span></div>
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<span style="color: blue; font-family: Arial, Helvetica, sans-serif; font-size: x-large;"><b>THANK YOU</b></span></div>
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I cover health, medicine, psychology and neuroscience.</div>
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If you start chatting with him at the local<a href="http://www.forbes.com/companies/starbucks/" style="color: #666666;">Starbucks</a> where he hangs out six days a week, you might not realize much was wrong with Howard Glick. Intense periods of working on his laptop punctuated by animated banter with the other coffee shop regulars make the 53-year-old native New Yorker seem like a regular Joe.</div>
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Howard tells people that he is a retired businessman who now devotes his time to a medical blog, which is mostly true. He is a former regional director of sales for a successful tech company. And he does have a <a href="http://earlydementiasupport.blogspot.com/" style="color: #666666;">blog</a> that educates people about a medical condition.</div>
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Inside The Mind Of Frontotemporal Degeneration: A Patient's Story</span></h1>
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<span applecontenteditable="true" class="Apple-Mail-URLShareSharedContentClass" style="font-family: Helvetica; position: relative !important;"><em>The first of the FTD patients talks about what it’s like to “live a life that’s slowly slipping away.” More patients will share their stories in the coming weeks.</em></span></div>
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<span applecontenteditable="true" class="Apple-Mail-URLShareSharedContentClass" style="font-family: Helvetica; position: relative !important;">A self-professed pain in the butt, Howard Glick, 54, has shaken up the FTD community, mainly for the purposes of bringing patients together and bringing attention to this little known brain disease. Last year, he launched a blog to chronicle his own road with FTD, and he is now, in concert with the Association for Frontotemporal Degeneration (<a href="http://www.theaftd.org/" style="color: #20007f; text-decoration: none;">AFTD</a>) and producer Joe Becker, making of a documentary titled, appropriately, “<a href="http://www.kickstarter.com/projects/thinkfilm/howards-brain" style="color: #20007f; text-decoration: none;">Howard’s Brain</a>.” He also heads an online patient support group for “FTD’ers,” the first of its kind. Caregivers are not allowed to join.</span></div>
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<span applecontenteditable="true" class="Apple-Mail-URLShareSharedContentClass" style="font-family: Helvetica; position: relative !important;">When asked to describe what it’s like to be “inside” a brain with FTD, Howard speaks candidly. “I </span></div>
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<span applecontenteditable="true" class="Apple-Mail-URLShareSharedContentClass" style="font-family: Helvetica; position: relative !important;"><a href="http://www.forbes.com/sites/alicegwalton/2012/05/09/inside-the-mind-of-frontotemporal-degeneration-a-patients-story/"><i><b><span style="font-size: large;">Click for full Forbes article 5/2012</span></b></i></a></span></div>
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<b><span style="font-family: Verdana, sans-serif; font-size: large;">I live alone and could use help. Am on Social Security Disability with no other help. Things are real tight. Gift cards, Starbucks, Costco, Trader Joe's, Outback, cash are deeply appreciated. For those that want to help </span></b><span style="font-family: Verdana, sans-serif; font-size: large;"><b>there is a <span style="color: yellow;">yellow </span>donation button on top of the page. </b></span><br />
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Howard Glick</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>7791 East Osborn Rd. apt. 170E</b></span></div>
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<span style="font-family: Verdana, sans-serif; font-size: large;"><b>Scottsdale, AZ 85251</b></span></div>
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<b><span style="font-size: large;">howardjglick@gmail.com</span></b></div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. There are 80+ members from 10+ countries. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at <a href="mailto:howardjglick@gmail.com">howardglickftd@gmail.com</a> to join.</i></span></b></div>
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<b><span style="color: #0c343d; font-family: Times, Times New Roman, serif; font-size: large;"><i>Howard</i></span></b></div>
Howardhttp://www.blogger.com/profile/07084503950259010035noreply@blogger.com2