Arizona ALFA Conference

 

Phoenix went great. ALFA - Assisted Living Federation Association conference has come and gone. It was an amazing experience from beginning to end. It began months ago when I was contacted by ALFA asking if I'd be interested in being a speaker. The Arizona ALFA committee and I had multiple Skype meetings about the conference. I learned it was to be in front of 250-300 members. 

I'll be forever grateful to Arizona ALFA for giving me this opportunity. Inviting someone with FTD or any type of dementia to talk to a large audience for 2 hours takes tremendous courage and vision. I can't say enough how the staff of ALFA has been on top of this since inception. Crystal and Rita had every detail worked out from talking points, travel arrangement, speaking as well as taking tours to multiple assisted living sites. This was as fine tuned an organization as I've ever run across. It was shocking and refreshing. Being sick with FTD I'm used to dealing with all sorts of agencies and Bozo's out there in society. It's disheartening to be kind in expressing how I really feel. 

Since being invited to speak at this conference I've heard nothing but how Arizona is a leader in assisted living care in the United States. Anyone who follows my writing knows how I've visited multiple sites in NYC and how I probably prefer death than to be checked into one of these house of horrors. Now I've visited multiple sites in Arizona and broken bread with many involved in making Az successful and there is no question that Arizona is the real deal with Assisted Living and there making a concerted effort to learn about FTD and take care of us in a well informed, respectful way.

I'm not easily impressed with any organization to say the least, but Arizona ALFA impressed the hell out of me. As with all well run successful businesses it's leadership that makes the difference. Karen Bono is the President\CEO of Arizona ALFA. I only met Karen briefly, but constantly heard from the people around her what an amazing person she is. Karen is a trailblazer for Arizona Assisted Living and visionary who is known and respected nationwide. Karen is on top of her game being named to numerous legislative task forces a guiding force in assisted living. No question that Ms. Bono is one great woman whose path is making a significant difference in many lives. One can only hope a hidden gem like this can move up to be a leader on a national level. I can only give her my wholehearted thanks in making one of my dreams come true and having the guts to let an FTD'er speak at her conference. Hey, Arizona is now firmly on my map when LTC becomes necessary. I can hear my friends on Team Howard moaning now.

The ALFA conference is the exact audience I dream of getting in front of. Long term care is a nightmare for patients, caregivers and these facilities. FTD awareness could go a long way here.

Of course I was well organized in heading to the conference. Had months to prepare my Power Point presentation and get everything together. Months turned to weeks and weeks to days. The day before I flew to the conference I hadn't had shit done. Absolutely nothing. I tried and tried every f-ing day, but it didn't happen. Oops, forgot that I had FTD. 

Was in a panic and wrote to Sharon Denny of AFTD quoting the "Astronauts Prayer". 

"Please Lord, don't let me fuck this up".

In my heart I knew everything would work out great and sent out a bunch of emails proclaiming I would nail this. I eat, breathe and drink FTD 24hrs a day. This was a defining moment in my life and there was no way I was going to screw it up. I was addressing a group that owned and operated assisted living for the state of Arizona. My mission was to have them leave leave and not only know what FTD is, but to have the knowledge of how to have there residences better serve there client/patients with FTD.

I told them the Howard Glick story and explained to them this isn't about me. Howard Glick and "Howard's Brain" is about every patient, caregiver and person suffering the horrible effects of FTD world. The years of misdiagnosis, losing loved ones, family thrown into turmoil, career ending abruptly, getting financially ruined and my total loss of hope culminating with a 4 day coma after a failed suicide attempt. Then the comeback. Disregarding my new partner FTD and finding a way to work around everything. Starting my blog which has crossed 68,000 readers, making an FTD documentary "Howard's Brain" which has about 200 hours filmed, starting the first and only FTD Patient Support Group with over 65 members, countless work with other FTD caregiver groups and forums and now a public speaking engagement. All this with no caregiver. If I had a caregiver I'm not sure if my survivor mode instinct wouldn't be in overtime like it is now.


We took frequent question and answer breaks. I showed "It is What it is", the "Howard's Brain" Kickstarter trailer and the current  GoFundHoward fundraiser my friends have put together to help me in my current situation.

We discussed at length behavioral issues and symptoms. How these problems effect life of everyone at assisted living and possible solutions in dealing with an FTD resident.

I explained my own quagmire of being forced to leave NYC. How staying in NYC is now dependent on a fundraiser by friends and loved ones. The fear I won't make it elsewhere without a support network. How I absolutely hate how my life being FTD dictated and how I just feel like hitting the road.

One man stood up in toward's the end of the conference and asked of everyone to collect donations for me. I thanked the man and am extremely grateful for any and all help, but honestly felt so embarrassed and humiliated. My life as a successful businessman has now come down to fundraisers and people offering financial aid. I've never been unemployed a day in my life and never needed a penny from anyone. I was handed an envelope after the my session with $800. Thank you Arizona ALFA members. This has been added to the  fundraiser under your name. Any others that want to help me continue on, your donations are deeply appreciated.

GoFundHoward

(CLICK)

I've had an absolutely wonderful life and still do. Arizona ALFA helped me attain a dream. A speaking engagement to a group where FTD awareness will make a big difference in many lives. I'm hoping there will me many more ALFA conferences and other speaking engagements in my future. I'm hoping this is just the beginning of my crusade to further awareness of FTD.          I'm ready to hit the road!

I'm sitting here laughing out loud at Darling Coffee, miles from my apartment. I've absolutely no idea how I'm going to make it home. I'm totally exhausted from writing. Hope this blog comes out okay. No energy to edit or even reread it.  I'll make it home, I always do.

Please share this blog and success story!!

Howard

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I've heard my appearance was an overwhelming success. Here are some of the first comments by attendees. I didn't add the attendees names because permission wasn't granted.

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Good evening Howard!  I cannot tell you enough what a blessing you are.  You gave the Arizona ALFA conference attendees the best two hours that they have had at our event in a very, very long time.  You brought peace to many that never had a chance to see their loved ones properly diagnosed, and you provided information on FTD that cannot be duplicated.  We will forever to greatful and you now have assisted living providers across Arizona supporting you!

Crystal

Assistant Director ALFA - Arizona Assisted Living Association.

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WOW!! What a great testament to the power of what you do, Howard. We all thank you for the great conference. It's all the buzz.
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Today I learned for the first time in my life from a funny, smart and courageous man that my dad probably has a disease called FTD, the symptoms, behaviors, and the misdiagnosis for 6 ½ years. I thought OMG he is speaking about my father.

His name is Howard Glick and I highly recommend to each of my loved ones and friends to visit is website and blog to learn about this rare disease which is almost always misdiagnosed as depression, Bi Polar disorder, manic depressive, etc., etc. and in my fathers case never diagnosed. FTD is Frontotemporal Degeneration/Dementia.

This was a powerful two hours for me and it gave me a true understanding of WHY my father was different from others. It instantly healed all my ill feelings and allowed me to find an inner peace.

I love you all and could not wait to share this with each of you and even though my dad is not here…..I know he now finally knows.

Hi Howard,

This morning I heard you speak at the ALFA conference in Arizona and I just wanted to tell you how so fuckin' inspiring you are!!! Excuse the language. You were the absolute best motherfuckin' speaker in the house! It's hard for me to even imagine what you're going through but I want you to know that your speech today will stay with me forever. I will donate what I can to you & your cause b/c it's an amazing thing that you're doing. Congratulations on doing what you love & being damn good at it!

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Howard, I was at the ALFA conference and really enjoyed your session. I am an assisted living nurse and learned so much from you and your experiences. Thank you so much. Looking forward to following your blog.

Howard, you did an AMAZING job and you opened so many eyes as well as healed wounds for many that never knew their loved one(s) had FTD. You are opening doors and spearheading a movement that will change the future of FTD research and the lives of those living with it. THANK YOU!!

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Howard, you did an AMAZING job and you opened so many eyes as well as healed wounds for many that never knew their loved one(s) had FTD. You are opening doors and spearheading a movement that will change the future of FTD research and the lives of those living with it. THANK YOU!!

FTD and GoFundMe

Hi Everyone,

Unfortunately things have been taking a turn for the worse in life. My struggles with FTD are getting tougher, with my friends noticing my slow progression more than me. The outside help I was getting that was helping me stay in my apartment and NYC has stopped due to unfortunate luck. My longterm battle to get my long term disability reinstated by Unum is over. The lateness of the appeal due to being misdiagnosed has enabled Unum to get out of there obligation. It's now at the point I can no longer sustain myself and my extremely modest way of life. I've cut back every which way and can't cut back any further. 

Now I'm faced with having to leave the area grew up in where I have neighborhood support as well as rare good medical care for FTD from Columbia University Medical Center. Anyone whose been following my blog knows that I'll move and do whatever I have to do to survive, regardless if I'm being told I shouldn't.

My friends, doctors and social workers are totally against me moving. I'm being told over and over it will be a catastrophe from those that know me and FTD well. Uprooting from an area of support to an area with absolutely no support and starting over with FTD I guess is not ideal.

Many friends who follow my work from around the world have been suggesting a fundraiser for a while now. My lifelong friend Marc Turkel (POA), Alice Walton, (Forbes writer, PhD neuroscience, biopsychology) and Joe Becker (filmmaker "West Wing", "It is What it is") have combined there talent to put together a Fundraiser on the fundraising site, "GoFundMe". 

There's a short piece written about me, what I'm trying to accomplish and a 3 minute film by Joe Becker.

*GoFundMe for Howard Glick*

Since being diagnosed with FTD about 3 years ago after years of misdiagnosis I've dedicated my life to furthering awareness of FTD and have become a strong FTD advocate.

This blog which I started has had over 66,000 visitors.
The documentary film I am making with Joe Becker for AFTD, "Howard's Brain" has about 200 hours filmed.
The world's only support group for FTD sufferers which I created and facilitate, The FTD Patient Support Group has 64 members and is extremely active.
These are a few of the many FTD projects I've immersed myself in.

Though I've slowed down a bit as FTD has progressed, I continue on these and other projects and will for as long as I can. 

I hate asking for help, but I need it. If you could please go to the Crowdfund GoFundMe link above and make a generous donation to keep my from being forced out of my apartment, it would be deeply appreciated. For those that can, there is also an option to help me each month. All I'm looking for is a bit of stability in living. To stay in my apartment and continue the work I'm doing that I'm being told is helping people world wide.

Thank you so much for whatever you can do. No matter what, I will keep going for that is what I do.

*If we raise enough fund, the excess will go to a special fund to help FTD Patients that are also alone.

Please share this with as many people as possible.

Howard Glick

The FTD Adventure Continues

Well, after a year of off my Cheerios routine breakfast, looks like I'm getting back on track. Last year I tried the Atkins diet and switched from cheerios to eggs and bacon. I got severely scolded by my Cardiologist  and a doc friend. The Atkins autopsy was done at Columbia and Atkins was a mess, according to my cardiologist that was privy to the results. Ordered me off of it.

Well I haven't been able to get back into my breakfast routine for 10 months. I have cheerios here at home. Bought milk plenty of times and threw out the containers unopened and spoiled. It's so hard to keep up with routines once there broken. FTD sucks, what can I tell you. Being alone and trying to stay on track with routines is incredibly difficult. Anyway, a few days a friend demanded I pick up milk while on the way home. I did and now it's 3 days straight eating Cheerios for Breakfast. "One small step for man, one giant leap for an FTD'er." Back on track. I don't need much of a push from friends or a companion, but I admit I do need a bit of help and a little bit of help goes a long way.

For me this is a significant accomplishment and I'm very proud that I got myself on track. Then I think about it and it's scary and ridiculous what my life has come down to. I pick my battles and keep on fighting.

Hygiene routine is the first and foremost in my FTD battlefield with that pesky parasite, depression a close second.

No matter what, I'm showered and shaved early each morning without missing a beat. From there it gets more difficult. Used to brush and floss my teeth twice a day. Somehow that dropped down to just once a day in the morning over a year ago. Better once a day, than not at all. Told my dentist a few months ago that I brush each morning and she told me to switch to the evening. Easy right? Not with FTD. Now I was skipping days missing nights and not brushing at all. Not good, teeth are the one thing in life that if you ignore them, they will go away.

Would like to say there's a happy ending, but I missed brushing my teeth last night. I did brush them this morning though. I'm making sure it's done at least once a day. Sometimes in the afternoons. Crazy life. Clothes, wash, cleaning etc. etc. The list goes on and on. 

My morning coffee routine is now a certifiable disaster. To me this is extremely important because this is the most productive part of the day. I put all my energy and focus on writing my blog and watching nice butts go by. On alternate days I keep up with my support group as well as all the others in FTD World. I used to go to Starbucks in my neighborhood, but that became to noisy and crowded after the renovations. I tried heading downtown for a while but the noise of the subways and overstimulation of mid-Manhattan became to much. That and the expense of being downtown ended this FTD'ers foray.

No question that I'm getting bombarded by noise and overstimulation here in NYC. I do wear noise reduction headphones, but that only goes so far. Doing the best I can to fit in here in NYC with FTD, but it's almost like trying to put a round peg in a hexagon hole. NYC is not an FTD friendly place.

I will be leaving the neighborhood tomorrow and will be trying to find a internet cafe to go each day to do my work. I've a few that I'll be trying out. I will continue to try to make it in NYC. I started showing FTD symptoms about 10 years ago. When diagnosed 2+ years ago I thought I'd be either dead now or close to it. Life expectancy then was 2-10, average 6 years. Now it's 2-20+ years. I'm going to make for myself the best quality life I can. Hopefully here in NY, if not, well America's a big country. I will make the best choices and decisions I can.   I'm alone in a complicated situation.

Howard

*If my writing seems off, it's because I'm writing from a very uncomfortable environment.  Things will get settled one way or another in the near future. I intend to live life and not wait for death.

FTD - A Howard Tune Up

It's been a while. People frequently comment how I handle this blog with FTD. It's hard and gets harder all the time. Consider this a tune up to get back on track. Trying to keep in a routine and get along in life is a daunting task, but I'm doing the best I can. Had two people send me "get off your ass and get out" messages this morning. I don't think I've left the apartment in 2-3 days. Of course I get to Cafe Bunni and there's a babbling, crying baby right behind me. NAFW (not a fucking word) Kid and mom left after 5 min. Guess there is a God.

The AFTD conference was absolutely wonderful. Better than last year. There were 16 patients and about 200 people there total. It was good to see people I knew from last year including patients. Just about all the patients never had seen an FTD'er before and many were still in shock over the diagnosis stage. Each one of us is totally different and there is no crystal ball on the journey each of us is to take.  I know my FTD progression is going slow and it was good to see others with the same slow progression as me. No question that we gage each other and take a deep breath. When I was officially diagnosed about 3 years ago after 6 years of misdiagnosis, they told me to make my "end of life" plans. I had 2-3 years left. 2-10 average 6 years alive. It seems each year they lengthen the possible lifespan. Last year it was changed to 2-13 years and then a few months ago 2-20+ years. Why the changes? Early detection with better brain imaging and detection techniques. That and the medical community still really is a novice when it comes to many diseases, especially rare brain diseases like FTD.

One of my funniest moments at the conference was someone who introduced me as an FTD Recipient. WTF, I was ready for the Congressional "Medal of Honor" to placed around my neck. I would rather be introduced as one of our "Bad Lottery Ticket" winners. 

So I guess I'm not dead yet and I don't plan on going anywhere soon. Spoke to a friend the other day who loves me and told me I need to be cautious in life with the time I have left. I asked him if I looked like I was going to die in the next year? 2 years? 3-4? He said no but as everyone in FTD world knows,  I can wind up in a nursing home in 3+ months with the unpredictable progression of FTD. Hell of a way to live your life. While we were having this serious conversation I tried explaining something to him that made total sense to me. It sounded great and he was paying total attention to me. Somehow in the middle of it I got totally lost without realizing it. I finished up. He sat there staring at me deep in thought. Then he said what I just said made absolutely no sense. I thought about it and realized he was totally right and I couldn't even explain where I was going with what I was saying. I was saying it with such conviction most people would have just nodded in agreement trying to figure out what I was saying and thinking it was them not on the ball. FTD. We laughed.

I explained to him I lose my trend of thought mid-conversation and it could lead somewhere without me realizing it. It freaked him out because I make so much sense most of the time. I told him how many caregivers take there loved ones to doctors and leave with the docs thinking there's nothing wrong with the (FTD'er) and offering to prescribe meds or a shrink to the caregiver. This happens more often than anyone would believe and is a scary thing. My friend also commented what a mess my place is. I tried to explain how difficult it is to motivate and get things done. He told me just to do it and get it done. Yea, he gets FTD :-) He also noticed my disgusting refrigerator was totally empty. I have milk for coffee in it. Of course like all FTD'ers we seem so normal all everyone says it we'll be there to support you when you need it. He never asked if I needed help cleaning or help figuring out how to get food in my fridge and how to solve my FTD symptom problems. It would be nice to have things a little easier, but that just doesn't seem to be the path I'm on.

Got into a car with someone else who told me he'll be there for me when I really need it. I looked at him  and asked if he was going to clean me up when I was pissing and shitting in my pants 10 times a day. He looked at me vacantly. Of course I'll have home health aide then or be put in a facility. Told him now is when I need the help. Might as well be knocking my head against the wall. 

I've many loving, wonderful people around me but people just don't know what to do with an FTD'er. It's an occupational FTD hazard. Frustrating for them and me. Just know I love all of you out there. I apologize to the person who had to stop me twice from picking my teeth with my fingernail and wiping it on her pants. Woke up thinking about that last night and how bizarre it was. Amazing how she took it in stride.

Forgot where I'm going with this blog, but it feels really good to be writing after a long absence. All I know is I feel I've got a few good years left at minimum. I'm actually hoping to make the 20 year mark. I know one person who has FTD 26 years. 

Things are rougher but I'm hanging in there and need to find a way to improve my life and become happier and live life. I refuse to sit around living my life in fear of an FTD decline. I need to stay productive with purpose and happiness. For me the future is now and I will find a way to make my life a bit easier.

For all of you that say I can't, I can and will. FTD can hang out, but Howard rules.

Howard

* I will be going into more depth about the AFTD conference in my next blog. This will include an exciting Phase III clinical trial for a drug that intends to stop the progression of FTD in bvFTD patients. I promise to have that out by Monday.

Dr. Jekyll and Mr. FTD

Was just standing and filming on the main drag (187th) yesterday when I was approached by a familiar face. He asked if I was "lost," I smiled, laughed and told him no. It's the street I'm known to wander and hang around. It took me a little while to remember Emile's name, but I've see him around on and off for decades and he knew my situation. Emile is someone I rarely see but know I can trust. That's something I've here in this neighborhood of New York. I was born and raised here and back and forth all my life. There's something about walking around a NYC neighborhood and not being able to walk 100 feet without nodding to a familiar face you've known forever, even if you don't know there name. You know them as kids, then adults with there own children and finally now some of them are becoming grandparents. 

I'll miss this neighborhood when I move. You build a whole relationship with the neighborhood. People envision NYC as totally cold and hard, but it's not. One of my docs, whose a good friend has threatened in the past to come to my apt door and drag me to her office if I don't make an appt. She still writes and calls for me to come in and never charges me. This is the real NYC that no one knows unless they live it. 

Since I've Goodyear Blimped out with my body, I decided to fast for a day or two. This way I would shrink my stomach and then start consuming smaller, healthier meals like salads. Hey, worked great. Fasted for a day and a half, then had a small salad for lunch. Last night uncontrollable carb cravings came on hard for Pizza/Pasta etc.. I drank about 5 glasses of water to help squash the hunger. Didn't work and about 10pm the Pizza delivery guy was knocking at my door with a Large pie. Hey, my stomach must've shrunk because I only ate 3 of the 6 slices. Normally I devour the whole thing. That of course led me to my smoke detector going off this morning. Got hungry this morning so threw the pizza slices in the oven. Forgot about it since I usually don't eat in the morning. While in the shower the smoke detector went off making enough noise to wake the dead. I use my smoke detector as a timer. When it goes off I know my food is ready. I was careful getting out of the shower. I usually run to the kitchen when the smoke detector goes off. I keep it on the kitchen table so it's easy to get to and disable.  Lost my balance a couple of days ago and feel out of the shower/bath. Since I don't wear a "Help, I've Fallen and Can't Get Up" pendents, I got out slowly before sprinting to the kitchen. I used to wear one of those Medic Alert bracelets but it interfered with sex, so I removed it. 

Not easy being alone with FTD. Maybe I should move to Utah and convert to Mormonism. Mormons like Jews. We're both outcasts. I've known many Mormons in my life and they are some of the finest people I've met and great partners/caregivers. A couple of wives would suit me well. Especially with this FTD teenage libido thing going. Hey, any Mormons reading this don't take offense. It's just me and I'm me. Maybe I'll come home from the AFTD conference in Salt Lake City with some wives or just stay in Utah. Need to do something in life where I've just a little help so I can devote time to some real FTD advocacy. Even with half a brain I know I can accomplish much given the opportunity.

As you can tell, it's afternoon and I'm losing it. I never write after mornings or do anything. Sort of a Dr. Jekyll and Mr. FTD thing. I start getting tired and awareness and self control disappear. I'm real fun to hang out with. Never know what I'll say or do. People around me are usually hysterical laughing or chasing me down the street wanting to kill me.

At Cafe Buunni drinking simple brewed coffee. Hopefully I won't get kicked out for staring at every butt that walks by. Just realized and became aware that I've been doing that for a while. Hey, at least there are nice butts walking by. No free refills here, so no 2nd cup. Outa here soon.

*****Just told the guy they need to do something about refills. He said there isn't a policy and would give me a free refill. Ah, more free butt time.

Howard

Frontotemporal Dementia Documentary - "It Is What It Is"

The award winning Joe Becker FTD short documentary, "It Is What It Is" has now been released in hi definition by AFTD through youtube. This powerful 15 minute documentary (plus 3 minute intro) shows you the harrowing effect FTD has on 4 different families. 

"It is What it is"

(18 minutes)

Joe Becker is currently working with me on a 2nd FTD documentary, "Howard's Brain" which is following my life living alone as FTD progresses. Howard's Brain is an ongoing project and will be a full length documentary. Please watch the 6 minute trailer.

"Howard's Brain"

(6 minutes)

Joe Becker is a seasoned Hollywood filmmaker whose numerous credits include the award winning hit  TV series "West Wing." 

Howard

The FTD Inconvenience

Went to the the supermarket where I walked out after ordering a sandwich a couple of weeks ago. The sandwich maker immediate approached me and told me she was very upset that I walked out while she was making it. I explained to her that I have FTD, a rare type of dementia and I do weird things and have strange behaviors. She gave me an understanding look and commented how she understood that I forgot and walked out and she got it. I told her no, I didn't forget, just didn't feel like it a minute after I ordered it and left. It's tough to explain the unexplainable and FTD is the unexplainable. I told her after I left the supermarket I stood outside for about 15 hungry and not able to figure out what to do. I didn't tell her it was raining/drizzling and I was getting wet but didn't care. Just standing there like I do almost every night somewhere on 187th Street like a freak of nature not knowing what to do.

Now is this a disastrous thing in my life. No, it's just a hiccup. Hey, I'm not starving and I've enough blubber on me to match a beached whale and keep me going for a decade or so. The food thing is an inconvenience of FTD which I'll deal with. 

Spent the last week in Tampa and it is definitely more affordable than NYC.  I was lucky enough to a member of my support group, Diana who also has FTD let me stay at her apartment and show me the town. I also met with 2 other group members and family members. It was wonderful to meet in person with people that share the same experiences of having FTD. There was a lot of laughing at our mutual FTDisms.

Of course there's no place like home and it's good to be back in NYC. I've excellent friends and support systems here. They don't want me to move and neither do I. Even got a note from one of my docs telling me she'd miss me and to stay put. Of course she doesn't want me to move because of that little complication called FTD. Over the next few months I will work with friends and try to find a solution to staying in my area. If not, well guess I'll be starting over in a new, warm city knowing virtually nobody. Many people have many suggestions, but if I can't stay here, I might as well be somewhere where I can enjoy warm weather year round and afford to live a decent lifestyle. As far as starting over, well me and my sidekick FTD will do what we have to do to survive and keep kicking ass.

Received a letter from CJ of the Florida Gulf coast Alzheimer's Association about the intent to start a EOD social program. A social program or support group for those with early onset dementia is crucial to help those with FTD or other Dementia's learn to live with purpose and happiness. Life isn't over when you learn you've FTD, you just need to adapt and live life differently. You can still have quite a few good years ahead of you.

There is no question that I'm doing well because of what I learned at Riverstone's "Memory Club." The Alzheimer's Assoc. and AFTD gave me grants to attend the support group and there has been nothing as valuable to me since learning I had FTD. With the growing dementia population, every city should have these groups. Social networking for those with dementia in Europe is now common at cafe's. The director of Memory Club approached me a few months ago about helping start a social program at a cafe here in NYC, but unfortunately I've been to consumed with my living situation. It is something that I'd like to get heavily involved in, in the near future.

Learning that you have dementia throws you into a state of shock. It's normal to just run from doctor to doctor and be totally consumed with your illness and mortality while at the same time driving everyone crazy around you. Some never get over it. If it was up to me, everyone diagnosed with FTD/dementia would enter a support group. Learning the invaluable tools to help live with dementia and the camaraderie of not being alone is invaluable. This would make life a lot easier for caregivers if there loved one gets into a groove early on with the disease. There's much support out there for caregivers, but it is extremely limited for patients. Hopefully this will change.

Howard

FTD and Brain Donation

Received my GLWD - God's Love We Deliver for the week on Wednesday. I switched to Vegetarian to try to be a bit healthy. My delivery came and they brought 7 meals of Mac n Cheese for the week. I don't even like mac n cheese. To bad they forgot the cyanide milkshake. 

Needless to say, I went out hungry to get a sandwich at the local supermarket. I ordered an unhealthy sandwich. As they were making it I had a change of heart and walked out. They were busy so maybe they won't remember me. I then went to the other supermarket and bought a box of Mallomars and Vanilla Wafers. Yep, finished both. 

Next day I made a box of pasta and threw on cream cheese and butter. Yep, finished the whole thing. So now I'm sitting here in walrus mode feeling like a beached whale.

This does have a happy ending. Called up GLWD a few minutes ago and there modifying my diet. Fish, chicken and vegetarian. No meat or pork. I tell ya, no matter how much I try it's hard dealing with all this shit alone.

Went to my neurologist at Columbia University Medical Center. I love Dr. Karen Bell, she's wonderful. In fact, I like all my docs. If I don't like them and aren't happy with them, I fire there asses. Can't understand people that complain about there docs being incompetent or them not liking them. When your sick, docs are the most important people in your lives. It's simple, you don't like them, fire them. I spent a lot of time meeting and interviewing docs. Yes, they go through job interviews with this oddball FTD'er. When I found the ones I liked, I cross referenced there insurances. Found out which one they took and switched my insurance. Now I've got the best docs I could find. Competent and I like them. So now that I'm all set with medical help, I'm probably moving to Tampa. Shit happens.

Spoke to Dr. Bell about my lip tremor and losing words. Nothing can be done at this point. If it gets real bad in the future, then it can be addressed. I'm glad. I'm a drug free FTD'er and I want to stay that way for as long as possible. Dr. Bell, whose opinion I value wasn't to happy about me moving and leaving my friends and support. 

While at Columbia, I completed all the paperwork for brain donation. Told them they could take out whats not being used now with an ice cream scooper. They declined and deferred to autopsy after death. To bad, I was hoping to lose a bit of weight with some unused dead brain cells removed. I just can't catch a break. Good thing is if I move to Tampa, they'll take care of slicing, dicing and shipping. Columbia is a great.

Next Thursday it's onto Tampa. Never been there before. My friend Diana is going to help me out and show me the town. Have to move somewhere. It's warm and has a bay/beach. Not a bad place to medically retire. 

What do I want in life? Time and a companion. Seems like FTD is progressing slowly enough to give me time to get substantial work done. A companion, not a caregiver to help me and put up with my oddball, strange FTD behavior. Hopefully I won't wind up all alone in Tampa.

I can only control so much and I'm aware that I'm unaware of much that happens. That being said, I do much better in public and around when I'm with someone and not alone. 

Haven't been happy in a while. Maybe I'll find some happiness in Tampa.

Howard

FTD - I care, but don't care

It's 4:42am. I'm up in a panic state. I'm not sure how I can make this move. My life is so warped and I'm having such difficulties. I almost never leave my apartment anymore. When I do it's sometimes to have a cup of coffee, more likely it's just to walk out to the local stores to try and figure out something to eat. I walk in circles and just stand not being able to decide what to do. Then I go home usually empty handed, distressed. I hate living this way. I have a charity food service now. I won't have that when I move. Opening aluminum foil containers for food gets tiring. I'm thankful for the service, but each day seems to get rougher.

I'm no longer taking my heart meds on a regular basis. I just don't care and am hoping this nightmare will end. I'm in survival mode all the time and rarely enjoy life. My mind is slowly dying and there's no way to change it. I feel exactly the same as years ago, but then I think of how I live life each day. This isn't life I'm living. It's just existing while compensating daily for losses in forgetting how to basically exist.

I constantly hear from caregivers that there is no reprieve for them. I feel for them and realize there is no  reprieve for me from myself. Am I sitting here in the middle of the night feeling sorry for myself. Yes, I have my moments also. I can't remember a day when I haven't wished for death. Yet, I fight on and I try to keep myself from going into deep depression.

I keep trying to push my mindset and attitude to a positive place that it will be a new beginning in Florida and will work out. Then again, each day is such a struggle alone here in NYC. I'm barely making it here and keeping myself together. I don't trust myself and my actions so I isolate myself most of the time. I'm good around people in short spurts, but try to refrain from to much communal activity. Never mind saying and doing strange things, my thought process is totally screwed up all the time. I can rarely think soundly on a consistent basis. I'm not even sure what I'm thinking and where my thoughts are are coming from a good deal of the time.

I wrote last week I spend hours and hours at home just staring quietly and not doing anything. The TV is on, but I rarely watch it. Someone wrote to me that her husband does that and what am I thinking during those times. I'm not really sure. Seems like I'm just staring into space and not thinking anything. If I am thinking anything, it's possible it's scrambled or I forgot soon after. It's almost like falling into a meditative state or asleep while being awake. Once in a while I realize the movie I was watching on Netflix is over and I missed most of, sometimes all of the movie. Where was I? Don't know.

My most cognizant moments are when I'm writing. I try to think through moving, not moving or how I can continue. Trouble is my desire to continue is slowly dissipating with my inability to use my brain.

If reading this is depressing, be thankful your not living it. This is my life and this is as real as it's gets. I'll continue to do the best I can, but the struggles of living and losing your mind is a challenging end. 

Lately, people have been making comments on my hygiene. Seems easy enough to fix, but it just doesn't happen. I care, but don't care.

A friend of mine Laurie just left me at Cafe Buunni. I try not to depress the people around me. It's getting hard these days. Told her I was heading down to Tampa in a few weeks with the anticipation of moving there. I explained there's no choice since I've found nothing here I can afford here. The important thing is I move before the money I have for moving and a deposit runs out. I've never been to Tampa, so this should be interesting. 

At times I feel I have nothing here in NYC, but I do have good friends, lifelong friends as well as many people that care and check in with me frequently. It must be hard for them to watch me deteriorate. I'll miss NYC.

A friend sent me info about a nursing home in the Bronx last night. I'm so far removed from that ever happening. Call me selfish.

I'll be thankful for having my own place and a roof over my head. These days I appreciate the little things.

Howard

FTD Island

FTD Island

An FTD Patient Sanctuary

Wouldn't it be nice. You unfortunately get a bad lottery ticket and get stricken with a life altering terminal illness. You lose your job, money, loved one at an age where life is going great and your on cruise control. As you slowly lose your mind, you drive those left around you crazy and strip them of the life they had. Your loved ones and caregivers watch as you change and disintegrate before there eyes.

75% of those with FTD don't have any insight or awareness that they're sick. The other 25% are painfully aware and become foreigners to themselves and others around them. We lock ourselves in bedrooms and homes painfully isolating our deteriorating minds from a world gone amok. We try everything to return to normalcy. Medications work for some, loved ones support helps others. Sometimes we are aware and care, most of the time we live not even thinking and just existing without awareness. There are always those wakeup calls that bring us back. The hug and kiss, the "I love you Dad." We give a response and are "back" before fading to who we are now.

Yesterday I booked my trip to Salt Lake City for the AFTD education conference in April. I've been trying in earnest to book it for over a month and struggling every step of the way. Confusion and indecision kicking in at each step. Constant frustration over every little detail that I don't know if I should do or not do. For business I routinely booked 120 flights a year, hotel, car and restaurant reservations. That was without the demanding job I was responsible for. Last year I remembering booking my reservations to the AFTD Conference immediately after it's announcement. Air, hotel, transport and corresponding paperwork were a breeze. Yet I feel exactly the same physically as last year.

A year ago it really bothered me standing out in the street not knowing where to go or what to do. Now hanging and wandering are almost normal. There are those brief moments though. A couple of weeks ago I was doing my supermarket/restaurant wandering thing of walking in and out of each place like I have a thousand times before. It was raining and I was standing under an awning when a couple approached me that I haven't seen in a while. They asked if I was okay. I sort of stuttered an answer and just stood there with a sort of shocked look. They had a concerned look and it was obvious I was in a bit of distress. In that moment I felt my life incapsulated. Where weird behavior and strange life struggles was so normal to me and then a shocking slap across the face wakeup call. No question things are slipping.

Now I'm facing having to move. Oh yeah. We having fun yet. Heard back from my landlord who owns multiple buildings in NYC. No luck, unless I want to move to a rough area of the Bronx. No luck from any friends or acquaintances either. I have a few months before I run out of moving money, so I'm not panicking.

I'm heading to Tampa in March with an open mind. Received a letter from someone about the lack of public transportation and how everything is scattered with the occasional gas station, 7/11 etc. Of course I'm picturing myself in 90 degree heat waiting for a bus for God know's how long. Finally get to a supermarket and after doing my "wandering" thing, come home empty handed to an empty refrigerator because GLWD God's Love We Deliver isn't in Tampa. Help! I want off this roller coaster. I spoke to my friend in Tampa who told me not to panic because there are always solutions. 

Amazing how quick life can turn upside down. I just have to keep it right side up. I will land on my feet  no matter what happens and things will be okay. There's just to much stuff to get accomplished and I can't let a little FTD get in my way. My 15 year old son Myles told me from Seattle, "Dad, you just have to keep fighting." So right. He feels my struggles.

A member of the FTD Patient Support Group found an Island in the Caribbean for us to all go. I'd be there in a heartbeat. 

Howard

FTD and Motivation

FTD sucks the motivation out of you. I've been highly motivated all my life. I never worked a 5 day, 40 hour work week, alway 6-7 days and hours as many needed. I've lived hard and traveled hard. My vacations have been extensive and I've been lucky enough to have been to 3/4 of the countries that occupy this planet. I love smiling, laughing and having a good time.

How fitting my arch nemesis would be a disease that robs your mind and sucks the life out of you. The last time I left my apartment other than a quick cup of coffee was meeting the filmmaker, Joe Becker downtown months ago. Seems the only time I go downtown is to get a haircut and those are few and far between and are instigated by the prompting of comments.

In June 2010 when I was diagnosed with FTD/dementia I used to take the same 2 mile walk every day in the city. I used to have coffee at my friends David/Ruthie each morning after waking them at 6:30am. Then it was Starbucks till it was made clear my royal presence was no longer welcome.

Now, I'm at cafe Buunni smiling because I'm out and doing something, writing. I come here maybe 2 times a week for a couple of hours to write. What do I do the rest of the time. Nothing. I sit at home and do nothing. The TV might be on but I rarely watch it. I'm in an empty gaze and miles away.

I sit alone and try to understand the truths of how I'm living and try to figure out and influence the present and future. How do I get myself out the door? How do I write consistently in my blog? How do  I get back to filming? Eating healthy and taking care of my hygiene which is slipping. The truth is it's getting harder to do anything or think anything through or do anything. I feel no pain nor anything holding me back. It is nothing tangible that I can say, ha that's the reason I'm acting this way. So what is it and why can't I just get up and get moving. It's because an area of my brain is under attack and has stopped functioning. My motivation has been stolen from me.

The whole concept of being robbed of your motivation is so foreign, I'm not sure if anyone can understand it. Is motivation a tangible thing you can see and feel. Where does the drive come from that has us function and conquest life. The big toe? No, an area of the brain. When you get paralyzed you can't walk. What happens when that area of Frontal and Temporal area of the brain dies. You lose your motivation. Just one of the lovely symptoms of FTD. Welcome to FTD world.

When I say sexual remarks to someone in the street I've never seen before or argue with the Chinese restaurant owner that she should get divorced and marry me, I'm just sort or doing normal things in my life. BTW I wasn't hurt that the Chinese restaurant owner wouldn't marry me. I don't even know her name. Once again it's an area of my brain is under attack that normally keep humans as humans and under control.

A friend came over for dinner the other night. Within 1 minute I broke dishes, glasses and things went flying. She left and wrote me that I scared her. I wrote back my aggression was not aimed at her and would probably take an army of shrinks to figure out the effects of losing your mind.

I have a friend who is looking to try and find grant/grants to enable me to continue to live and do this work in NYC. Most Grants are for Caregivers or Research. If anyone has any suggestions, please let me know. My landlord and others have told me there are no rents in my price range. New York City is home and I'd like to stay, but I'm preparing mentally to move. I'll be visiting Florida in March and looking for a place I can afford. Right now I'm leaning toward's the Tampa area. Might as well be somewhere warm and by the water. I have a few months and am not in panic stage, but pressure is there. Hope I'm not heading towards disaster. Navigating unchartered waters with FTD has become a way of life.

As a good friend always writes, "Forge ahead."

Howard