Sunday, February 14, 2016

FTD on HBO Feb. 19th

* I created a private FTD Patient Support Group on Facebook.  The group is 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 howardglickftd@gmail.com to join.
Howard

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.

HBO Vice Preview: (30 sec) "Right to Die"


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.

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....

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.

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.

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.

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 taking 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.

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.

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. 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.


FTD Death Grin


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 friend 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

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 there is a yellow donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:

Howard Glick
3620 N 6th Ave. apt 115
Phoenix, AZ 85013

Sunday, October 11, 2015

FTD and Voices of FTD

* 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 howardglickftd@gmail.com to join.
Howard

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......... 

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. 

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. 

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. 

AFTD placed this ad in the Sunday NY Times:
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. 





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.

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.  


AFTD-Voices of FTD


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 there is a yellow 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:

Howard Glick
3620 N 6th Ave. apt 115
Phoenix, AZ 85013

Tuesday, October 14, 2014

Death Plateau

* 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 howardglickftd@gmail.com to join.
Howard

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. 

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.

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.

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 filmmaker.  I'm forever appreciative for any and all help I get.



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.

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.

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.

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.

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.

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'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. 

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.

Howard

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 there is a yellow 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:

Howard Glick
2929 N 70 St apt 1053
Scottsdale, AZ 85251






Saturday, October 4, 2014

FTD Abuse and Awareness

* 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 howardglickftd@gmail.com to join.
Howard

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. Have to love FTD Swiss Cheese Memory.



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. 


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.

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. 

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.

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.


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 there is a yellow 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:

Howard Glick
7791 East Osborn Rd. apt. 170E
Scottsdale, AZ 85251

Thursday, September 25, 2014

The Alzheimer's Assoc. and FTD Awareness & PASRS CONFERENCE

* 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 howardglickftd@gmail.com to join.
Howard

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.

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. 

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



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 information with them.

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."


(Click to see short film)

(click to see )

I love what I'm doing with FTD awareness. If anyone needs me for a speaking engagement, I'm free to travel anywhere, anytime.



























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 Howard FTD Team. 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......

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.

Howard

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 there is a yellow donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:

Howard Glick
7791 East Osborn Rd. apt. 170E
Scottsdale, AZ 85251





Tuesday, September 2, 2014

Howard Glick FTD Update

* 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 howardglickftd@gmail.com to join.
Howard


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.

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.  Then I just disappeared. Never returned calls from friends or associates. My absence was a mystery to many.

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.

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.”  Then I was gone.

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.

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.  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.

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."

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. 

FTD Cocktail - 
1 part Hypersexuality, 
1 part No Filter
1 part Apathy
= Inappropriate sexual remarks, comments and behaviors that the FTD'er is unaware of.

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.

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.

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 :-)

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 feel in of having restless leg syndrome from head to toe.

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.

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.

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.
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. 

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. 



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 assault. Am hoping to bounce back. Almost didn't make it this morning, but an early email from the director of AFTD got me going. 

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..........

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. 

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.

Howard

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 Donation 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:

Howard Glick
7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251