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
7791 East Osborn Rd. apt. 170E
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

Tuesday, April 8, 2014

FTD and Death with Dignity

* 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 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. 

Living alone with FTD is so hard. Living with someone or a caregiver would be impossible. 

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.

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.

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.

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.

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.

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.

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.

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!!

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.

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. For those that want to help 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:

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







Friday, April 4, 2014

FTD and Swiss Cheese Memory

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.

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.

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.

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.

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. 

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."



Thunder, rainbow, nuclear bomb and sandstorm the other day from my balcony

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.

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.

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.

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.



* 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

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 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:

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