FTD Support

Flu shot

The AFTD medical board was recently posed the question by the FTD Patient Support Group whether the flu shot was safe. The AFTD medical board is made up of the finest minds in FTD research and medical management. It's perfectly safe and recommended for those with FTD. I received my first flu inoculation ever last week. Still here. Remember when you get to heaven and God see's you've died from FTD, well you paid your dues and get an ocean view room. If the list says you died of stupidity not getting a flu shot, you get a basement room.

Advertising

Since reaching 100,000 visitors I've received more than 20 requests to advertise from people I know. The mission of this blog is to spread awareness of FTD. To share my experiences of living life with FTD and to disseminate accurate information. The purpose is for FTD'ers, caregivers, loved ones and the medical community to gain understanding and insight into FTD. Many who wish to advertise are friends and follow this site. I cannot in good faith stray from my mission of keeping this a site people trust. Therefore I will continue with my policy of no advertisements except for occasional AFTD sanctioned fundraisers like this current AFTD  Example: This is a great fundraiser from a loving family.

(Click) Hope runner

FTD can be an isolating lonely experience. First the diagnosis after months or usually years of misdiagnosis. Then shock, I have dementia and I'm going to die.You lose your career, your money, your family treats you like a child and most even have there ability to operate a vehicle, they're drivers license taken away at the beginning stages. The air stinks of fear everywhere you are or go.Your told to make your "end of life" plans and to get prepared for death. Your alone and no one gets it. So your stuck at home, lonely, just watching TV, not getting out of bed, getting aggressive and depressed knowing FTD is a one way street. Your life has now become getting shuttled back and forth to white sterile rooms with doctors who treat you like shit and just want to run more and more tests. Your life has become a living hell. Your alone and no one gets it. That's without FTD sucking the fucking life out of you. Making you unmotivated, stripping you desire to do anything. Your eating habits change. You crave carbs and sweets. You get obese.

Then comes the epiphany, why don't I go back to work. One day you proudly you state to family or friends I'm returning to work. Every one of us do it. You get the look. I'm sitting here right now feeling it. I said that to my girlfriend last year. Received a worried and concerned look. Are you out of your fucking mind. You stand silently realizing I feel perfectly fine, yet so fucked up. You can't even do the application. I can never work again. Yet I feel healthy. What happened? FTD. You continue to withdraw into your silent death space.Your family tries to help and show love, but your resentment for having your death space intruded upon makes you act out in unimaginable ways. You don't even recognize yourself and your actions. You withdraw silently. Your scared to communicate. Your in the car with loved ones and silent. Your a living ball of tension. One word said and you lash out. You know your thinking isn't straight. Sometimes you don't understand what's being said around you. Someone says, "your best friends daughters birthday party is cancelled because her boyfriends father died". Silently you sit not having a fucking clue of what was said. Silently you sit for fear of being found out. Silently you sit because you know your slowly losing your mind. Your alone and no one gets it. You go to a restaurant. You hear every conversation and noise around you at once. Your on edge and lash out at the first misstatement. Your friends or family take you out quickly. They understand, but stress and resentment grow. There life has also changed and is ruined. Medical bills come in. Time to sell the house and downgrade everyone's life. What happened, FTD. Headaches, tremors, speech impediments. Your alone and no one gets it. Words flow from your loved ones lips, daycare and assisted living. But I'm in my 40's or 50's. What's happening to me. Your alone and no one gets it. FTD is a one way trip. Unstoppable, untreatable and incurable. A one way trip with no return. Depressing isn't it.

Depression is the number #1 enemy for those with FTD/Dementia . Everyone is under constant attack from that pesky parasite. If you don't get out of bed or shut off the TV, that pesky parasite feasts on your heart and soul. 

Why the fuck am I happy every day. I choose to be. Happiness and a good life is a fight with all your heart and soul when you have FTD. I spent 6 years a drugged up mess while being misdiagnosed. Even after diagnosis I was given anti-depressants because those with dementia are depressed. I threw them in the trash.

I've a mind altering disease and you want to give me mind altering drugs. That makes a lot of sense. Fuck you and your chemical dependancy. I've stolen my life back. 

Yes, I'm angry. Why? The further I stray from the traditional pill dispensing genre of Western medicine the better I feel. I'm out here alone with a few buddies, but no friends or any one to lean on. Big deal. Yesterday I got lost and found myself on the campus of ASU. Don't care about getting lost anymore. I'm always okay and no matter what, know that I'll be sleeping in my bed at night. Unless I get lucky and wind up in someone else's bed. Was scared of getting a ticket at a meter, but was told that with my handicap plate I can park anywhere. Found a great barber while lost and FTD educated her. Then spent the better part of the day on campus around students educating them on FTD. One suggested I smoke pot. I laughed and told him I'm stoned being straight all day. Attitude with the innate desire to make the best of each day. Living with happiness and purpose keeps me going. 

*Of course many get helped by and need modern medicines. Just speaking from my experience of taking to many screwed up drugs that were suppose to help, instead had more harmful side effects.

Changing face of support.

What helps me along. People. People help people. FTD Support is one major reason for me living successfully with FTD. My health will get progressively worse. Nature of the disease. For now, I'm making the best of every day. Who are the best people to help people with FTD. Those that totally understand and "get" the disease are those with it. I stop in Starbucks or anywhere they have free internet and get involved a few times a day. We've 80 members in the group with most constantly floating in and out. Many are involved and many read the posts and once in a while post. There is no right or wrong in the group. There is a unique understanding that we're all 'comrades in arms' and fighting the same battles. We tackle all the issues and laugh at ourselves and the world around us. Some are alone, with families or are in assisted living. The group has been running for 2 years and we're like a family now. We hail from 10+ countries (lost track) and have that bond of FTD. The positive repercussions of the group are felt by our families and the outside world. We all learn about ourselves and share our experiences in relation to the medical community, social services, family etc. 24 hours a day it's running and there's always someone on. We discuss what drugs work and which don't. We keep up better than most docs. AFTD is there with there director, Sharon Denny who is our accomplice and fact checker. We laugh at ourselves and our FTD kinks as well as the world around us. Who else would understand a group where separate people can admit and laugh about putting books, dishes and underwear in the refrigerator. We might be a little FTD'ed, but we're not crazy. Can't remember a day when I haven't been on the sending or receiving side of texting, emailing, phoning other members. We're truly friends and the communications can just be to say hi or because someone is ready to fire or kill there doc. We openly visit each other in our areas and when we travel. People mail fun gifts to each other etc. 

The face of support and help in the world is changing. We've tried chat, phone in's, Skype and other technologies. Some work, some don't. It's an exciting new world and my job as leader of the band is to find the best communication techniques for me an my family. In a world where most public support group and resources are thrown at caregivers this is a refreshing, proven means of support. 

There are other groups on Facebook now that are generic in nature for FTD/dementia. I feel most need a base group like the FTD Patient Support Group and then bop around to others. No question, the most refreshing groups as well as those that have the best and most accurate information are now on Facebook. There are also groups which I recommend FTD'ers to avoid. Things change and are in constant flux. Just like good medical care, people need to know which sites really have good support. Same thing with docs and medical research centers. 

Caregivers do the same. No question the most active support groups and best resources are on Facebook now. I will be furnishing a new list of recommended support groups in the near future. AFTD has a phone support group set up for patients now.

Though I live a life with a diminishing mind. I will fear no evil and continue to do my best to keep up and evolve with technology and techniques to help give the best support possible. You fail a few times and then the light bulb is created by accident.

Please email your group, caregiver, patient or mixed to go on the list I'm putting together. FTD, Dementia's, Lewy, Alz and other related will go on the list. Please email me about a group you run or enjoy. howardglickftd@gmail.com

Howard

I live alone and where not destitute, I could use help. Am on Social Security Disability with no other help. I'd like to see my children more than once a year. Gift cards, Starbucks, Costco, Trader Joe's, Whole Foods, Outback, Red Lobster, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Living med free in Arizona

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

Land of diminishing skills

I'm feeling great. In fact I feel the best I have in years. No, not having sex. Arrived at Starbucks around 5:45am fully rested after about 3-4 hours of sleep. That sleep estimate is conservative. Insomnia and all dementia's go hand and hand. Studies have proven that. Have tried all the meds, sleeps aids, melatonin, warm milk and even turkey fat. Like everything else with FTD. Ignore it and keep on going.

Change of routine and I feel like a new man. I'm a relentlessy driven asshole who will push himself to the edge of recklessness. Have always been this way. Probably why I've always been successful in business. Though driven, I've alway been wise enough to pull back when necessary. That's until now. FTD has put up an indiscernible wall. Now I'm not sure when I've reached the level of necessary pullback. This insidious invisible disease has me grasping at straws as to when I need to slow down or stop. I no longer have the reasoning or judgement to safely judge when enough's enough.

I'm alone with FTD. I have no caregiver. Don't want one. What I have is wise and caring people around me. Sharon Denny, the director of AFTD has been an indispensable friend the last couple of years. Sharon has taken the brunt of my FTD rants throughout the last couple of years. It's a miracle she hasn't abandoned ship. There is no way without Sharon's help I could've made it this far. She was writing to me that she could tell I was getting scattered by my emails. I took notice. A buddy of mine at Starbucks also told me I should slow down. Lastly a friend of mine from NY Glenn said something. I immediately implemented change and recovered quickly. I've friends and people I trust. Enough where someone will help keep me on the path.

I'm really doing great now. Feel like I've had a vacation. The move and settling in is now done. Did what I had to do dealing with the world, FTD and myself. I'm alone here but each morning I wake up in paradise and it's going to be a great day and guess what, it is. 

I'm in the land of diminishing skills and there's always things falling through the cracks. Sometimes I say screw it and those things come back to screw me. One skill set I've lost in the last year is the ability to take care of my own finances. It's gone. This is something I'm going to have to get help with. I don't have a handle on anything. Not a clue. All I know is I've reversed my retroeconomic situation of NYC. Still, I'm on SSD and there's not much wiggle room. I've spoken to friends who've told me what I have isn't much and to be careful.

Somebody offered me frequent flyer tickets for my kids, but forgot who it was. I put a paragraph out in a post a few weeks ago for some help, but got embarrassed and took it down. One of the reasons I left NY was I hate, absolutely hate asking for help. I check my bank account no less than 20 times per day, not sure what's going in or out. Not able to gage whether I'm okay or not. All I can do is be prudent, spend little and try not to drive myself crazy. 

It's almost a year since I've seen my kids. Last week I was on the phone with a woman and her kids were in the background. She had to get off to make them dinner or something. When she hung up there was a profound emptiness is my stomach. I miss my kids talking, laughing and being obnoxious. Been a year. Once a year, seeing your children is tough. Sometimes it jumps from a week to weeks to a month when I call my kids. The weird apathy thing. Have been better since in Arizona. When they pop into my mind I force myself to call immediately, even if I don't feel like it. Guess I'm sometimes distant on the phone. They know I love them in my own special way. 

Have been wanting to book them tickets for a while now, but can't get it together. Scared to spend the money. Meanwhile the prices keep going up steadily. Finally I pulled the plug and just booked them in  a panic. Actually sat in Starbucks with my hand in the air with my index finger raised. I must've had the page with the tickets open at least 30+ times the last few weeks. Finally my Statue of Liberty pose ended with my finger coming down on the return button. I'm happy I did, but it was a chunk. A couple of you out there have helped me and I'm forever grateful. One person sent me a $100 Outback gift certificate for a housewarming gift, but I'm saving it for my kids to come in for winter break. 

Whether I'm okay or not, I've no idea. I've no safety net in life. No fallback plan. No Power of Attorney. No nobody. All I can do is keep on keeping on. When I first moved here I was eating at the Chop Shop and had salad almost every day. Those days are over. Now it's about twice a week. 

I'm feeling healthier and have lost 31 pounds since leaving New York. Am successfully fighting the FTD Carb crazy weight gain issue. Eat the same thing for lunch 5 days a week. A can of whole beets. 69 cents and healthy.

 Wiped out the supermarket yesterday. Of course I went to the checkout counter with the pretty blond. I started unloaded when a guy replaced her. Disappointed, but I'll get over it. Then he disappeared. I saw blondie standing in the next isle. I asked if she or the guy were coming back. She said the light was off and I needed to go to another register. What fucking light? She pointed. I was about to walk out with the cans left on the conveyer belt, but was hungry and needed my one can fix beet lunch. Reloaded, moved, NAFW (not a fucking word, my mantra) and paid the man. Not sure what happened. Guess I got distracted. Never had lunch. Not sure what happened. Not a big deal. Haven't had a home cooked meal in a long while. Not complaining, just thinking out loud. Was hoping to make it to NYC for Thanksgiving, but that won't happen. Guess what, I wake up in Paradise every fucking day with a smile on my face. Fuck you FTD.

Dinner was great. Went to my new quiet hangout Stax and had the $3 happy hour wings. Met Dopey there. She disclosed this and one other were her favorite happy hour places. The other was a full dinner for $20. Didn't tell her it that was out of my league. Dopey asked me if I drank. I was sipping my diet coke. Told her I never drink and drive. In Arizona, I'm always driving so I don't drink anymore. The Police are legends for not fooling around and DUI would finish my life off. 

Dopey told me it was okay to drink during the day. The police never pull people over during the day. It was around 5:30pm. She was drinking. Scottsdale PD only pulled people over after 9pm, Dopey expounded. Think she wanted me to drink with her. I wasn't impressed. Told her I never drink that early anyway. Truth is I haven't had a drink in way over a month. Since there's no food but beets at home, makes no sense to have alcohol at home. Can't drink on an empty stomach :-) A few minutes later Dopey was having another drink. She disclosed she wasn't driving. Her license was pulled for DUI. Dopey

"Howard's Brain" is on hold for a little while. Lost my balance and fell in NYC right before the move.  Can't hold the camera or even a glass of water. Typing hurts like hell. Still doing a bit on the tripod, but not satisfied. Really don't know when I'll see a doc. Been trying. Just not happening. FTD

Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Living med free and doctor free in Arizona

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

100,000 Visitors

*10/10 - At the Forbes Health Conference in NYC today the Chancellor of UCSF just brought up FTD. Unfortunately she used FTD as an example of a disease not far along in research.

I've reached a major millstone of passing 100,000 visits to this Blog. That's a lot of FTD awareness. Thank you for your patronage.

Yes, I am proud and went out to celebrate. Went to my favorite place Stax to watch part of the ballgame and have $3 Happy Hour wings. They had a different game on the so I went out for a walk. When I got back Happy Hour was over. Of course, the price of wings went up so I couldn't order them. They gave me the regular menu. Might as well of had it stamped, "FTD'ers need not open". Of course I couldn't decide what to eat and left shortly after finishing my diet coke. Watched the game at home. Water and air for dinner. Hey, it's healthy. I really don't give a damn about being hungry anymore. Have plenty of my walrus (NY Pizza) blubber to keep me going. My weight is dropping quickly and I feel healthy.

I arrived here from New York totally driven by the need to make it and succeed. Failure was not an option. Failure meant Assisted Living or a long walk out into the desert. The move was a disaster. Most of my furniture and belongings wound up strewn out on the NYC sidewalks. All the boxes opened with me trying to decide which shoes to throw out in the street. Many things left behind were stolen. Some got sold while I was there. Most of my things in the end were thrown out. The people that bought things never sent me the checks they were going to. Uhaul was responsible for much of the disaster and a good FTD'er friend Darla really did an incredible job of getting me my things which were late and opening a case with there insurance company. I thanked her profusely and dropped it. Time to move on. What's done is done. Had to get my life together.

I then proceeded to apply for an Arizona Drivers License. Turned into a month of Hell with both Homeland Security and then New York State DMV revoking my license. If you haven't read this, read this.
Drivers License "not eligible"

Through it all I stuck to the mission. What's an FTD'ers mission to success while he can still fight. Routine, routine, routine. Nothing could stop me. 7/7  Seven days a week arrive at 7am at Starbucks.

Every week I was committed to burn out 2-3 good blogs. 

Furniture, fuck furniture. Drivers license, fuck drivers license. Food, fuck food. Medical care for my hand, fuck it and deal with pain. 7/7 routine. Failure is not an option. Setbacks yes, about 5-10 a day. Who cares, fuck it and keep blogging.

7/7 Blog in the morning. Head home around noon for 2-3 hrs. Ding, back to another Starbuck for my $2.11 ice coffee with free refills. More FTD work. Keep going. Everywhere in Old Town Scottsdale has free Wifi. Dinner at Chop Shop salads or Happy Hour appetizers somewhere while working on my laptop. Blog, support groups, emails, filming "Howard's Brain". 7/7 Don't stop. Keep fucking going. Failure is not an option.

Each night arrive home between 8-9pm. 7/7 baby.  Routine, routine and routine.

For the last couple of weeks I've been on the verge of collapse. A breakdown or worse. People noticed. It was visible. Some Sbux buddies started telling me to slow down. I wasn't recognizing people I just met. Not once in a while, but all the time. Started writing paranoid, almost delusional letters to AFTD girl who was starting to get very concerned as well  and the filmmaker Joe Becker, Couldn't stop, didn't know how to. Have been routinely harassed by a sick FTD'er for over 6 months. I've been ignoring it. Not now, lashed out and started posting his demented postings on sites. Almost got thrown out of a support group. Was in a routine that was to much for me with FTD. I knew what was happening. Fuck it, keep going. My life, my choice. My goal was a successful move. To Howard Glick that was successfully getting my core cranked. My core is my Blog. 100k baby, 100k. 7/7 2-3 good blogs. Routine, Routine Routine. Don't fucking stop for anything. Fuck it, keep going.

WHY?

FTD

I'm not out of the house once, just once by 7ish and I may not make it out for weeks.
I don't brush my teeth once in the AM and I might not brush them again.
I don't shower once, who knows when I will.
I don't change my clothes each day, I'll wear the same clothes for weeks or longer.
No food at home on purpose. Get out and stay out of the fucking house 7/7 morning till night.
Starbucks, rest, Starbucks out till 8-9pm. 7/7
Out of the house 7/7 with a smile on my fucking face.

Why? 
Every day is going to be a great fucking day.
Every day I'm going to live with Happiness and Purpose.
Every day I'm going to do my work. 
Every day I'm going to make people aware of FTD.
Every day I'm going to Film.
Every day I'm going to Blog.
Every day I'm going to facilitate the FTD Patient Support Group.
Every day I'm going to return emails & correspondences.
Every fucking day. 7/7
Every fucking day I will meet my goals. I will not fail
Get it.
Routine, routine, routine = work, work, work - There is no stopping. There is no second chance. 
I let that pesky parasite depression into my life and I'm dead. Depression is not a fucking option.
Failure is not a fucking option. 
I will not fail.
I will never give up.
I will never just survive, I will flourish.
FTD can hang out, but Howard Rules!

I'm Aware That I'm Not Aware 

I've reached 100,000 people on my Blog.

I'm settled into my apartment

I have an Arizona Drivers License

I've lost about 30 pounds

No friends, but I know some people

My move was a success. 

I'm on the verge of collapse and switching routines.

I'm going to be slowly down and writing less blogs.

I'm Aware That I'm Not Aware 

I'm going to be switching gears and continue the book I started. "I'm Aware That I'm Not Aware"  will be about living life with Frontotemporal Dementia. This book will not just be about Howard Glick, but every sufferer and caregiver in the devastating FTD world.

6+ years of misdiagnosis led me to a suicide attempt, 4 days in a coma, 7 weeks in NY Hospital Payne Whitney Psych ward. That was rock bottom and I lost everything a man can lose.

Does anybody doubt my resolve in finishing, I'm Aware That I'm Not Aware?

Thank you to those that have sent me letters, gift cards, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, cash. Letters with FTD questions are fine:

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Living med free and doctor free in Arizona

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

Where are the Black people with FTD?

My proudest accomplishment is creating and facilitating the FTD Patient Support Group. There is a lack of support for patients with FTD. There is no blame, there is only change and awareness. Change and balance is always necessary. It is usually instituted by progressive thinkers and not those staying in there cookie cutter mode as the world changes around them. You see a problem or a need continuing, you bring it to light, address it and implement change as necessary.

I've my hand raised for a question to this worldly classroom. Where are the black FTD'ers? I became an FTD awareness advocate close to 2 years ago and I've yet to run across a black person.

Most diagnosed FTD'ers are caucasian. My support group though mostly white, does have asian and latin representation as well. It's a mix from the U.S., Canada, Ireland, Mexico, Norway, Israel, Puerto Rico etc.

Have been to two AFTD conferences in Atlanta and Houston, none there. The U.S. has a substantial African American population and I've yet to see or hear of one FTD'er. Actually one, ex-Football player John Mackey which we will visit later.

Have over 600 FTD Facebook worldwide friends and thousands of contacts from there. Not one black person.

Have been contacted by government agencies and the equivalent of our Alzheimers Assoc. from Israel, Denmark, Argentina, etc. No black or African countries.

Way over 10,000 FTD related emails. Not one.

Could it be that FTD/Dementia just isn't a black persons disease?

The NY Times recently published an Alzheimer's article disclosing recent findings that African Americans have a higher risk of Alzheimer's than European Americans. FTD is closely related to Alzheimer's.

NY Times 2013/04/10/ African Americans have higher risk of Alzheimers

Alzheimer's Assoc. finds that Alzheimer's rate 14%-100% higher in African Americans than caucasians.

Alz. Assoc. African Americans Silent Epidemic

Okay, there has to be FTD in the African American community. Where are the Black FTD'ers?

Could it be socio-economics? Could it be based on income that better health insurance gets you the better docs which in turn gets you the more expensive testing necessary to diagnose FTD. There are only a handful of University Medical Centers that handle FTD. Very few docs qualified to make a proper diagnosis. I promise you that most docs out there will misdiagnose your black family member and his life and your families will get wrecked. There are of course many that have excellent insurance and means to get good medical help. 

FTD can be as elusive to a doctors knowledge as it is to a firm diagnosis.

I will not write and be judgmental about how fucked up our shitty healthcare system is :-)
What I will about the US healthcare system and how we treat our own people is an absolute disgrace. History will look back at our healthcare system as a huge blemish in what could've have been a truly great country. One that fought over the basic needs of there own people.

Universal healthcare should be a free and equal right of all citizens. 

Doing my due diligence I ran across an extraordinary African American man that developed FTD. Only one I could find. His name was John Mackey. John Mackey was a larger than life football player. Not only did he have a hall of fame career with and winning a Super Bowl title with the Baltimore Colts. Mr. Mackey was the first President of the NFL Players Union.  John Mackey probably developed FTD from repeated head trauma due to football. I know two other players that have developed FTD from football. At least everyone's as sure or that as can be. John Mackey's wife Sylvia is a remarkable woman who is a dementia advocate and holds a chair on the AFTD medical board. I'm lucky enough to know a family friend of the Mackey family who went to Syracuse with John's daughter. Howie told me of what a remarkable family the Mackey's are and what an incredible person John Mackey was. I'm attaching an article and Utube footage of John and his wife while he was in Assisted living. This is a true American Hero family.

John Mackey Utube in Assisted Living Happy

NY Times - John Mackey remembered


Two years ago Sharon Denny, the Director of AFTD came to my NYC apartment with Joe Becker the Filmmaker came to my apartment because I was discovered to have awareness and insight with FTD. I told them I wasn't an anomaly. I've proven that through my support group and other work including this blog.

Well, African Americans and blacks across the world, your not an anomaly either. Time to wake up.  You have an invisible disease scourging the heart of your community. FTD travels incognito as a mental illness. Depression, bipolar, schizophrenia to name a few.  Up to 80% of all FTD cases are misdiagnosed with many like me being tortured and place in a medically induced fog for over 6 years. Those misdiagnosed are placed on meds that often exacerbate the FTD symptoms and spin the unknowing out of control. Can you see my hand raised again.

The hardest part of writing this article was making sure I didn't offend anyone because I was discussing race and using words such as black, african american, white etc. So everyone knows, more than 30% of the 100,000 that have visited my blog are international.

My neurologist who doesn't follow this blog is one of the best neurologists in the country. I first met her at a dinner when she was receiving a neurologist of the year award. I had a choice between Dr. Karen Bell of Columbia University Medical Center and Dr. Edward Huey, well renowned FTD specialist also of Columbia.  Dr. Bell is an exceptional African American Neurologist who already does incredible outreach to the African american community. Dr. Bell and I also grew up in the same area and both used to shop at the long closed Kappy's Record shop. I've also known 5-10 of her patients including her first one Tony. Only one hated Dr. Bell. She had Dementia, what does she know :-)

*Dr. Karen Bell - profile

I'm hoping someone will carry the torch of this article to Dr. Bell or others in the African American community. FTD awareness is desperately needed. Who will carry this torch. If not you, then who. Share this awareness article with your community whatever country, city or state you live in. People should not be suffering needlessly. Shame on us who do not do.

For more information on FTD. You can look at the links on the right side of this page. There's the 2 Forbes articles, the 6 minute Howard's Brain trailer and the AFTD Association for Frontotemporal Degeneration site and plenty of other info in the other links.
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On a lighter note, I've continued to lighten up my Walrus size body. I've dropped from my  NYC high of 246 pounds down to 218 pounds. Got my inspiration from my group member Kevin Smiley who lost 25 in a month. I've no idea how many pound I lost from the above numbers. Welcome to the FTD land of diminishing skills.

The Howard Glick secret to losing weight. Don't put the scale in the bathroom. That's an act of idiocy, put it in the kitchen. Now that's a deterrent to unwanted eating. 

So is a pretty empty fridge :-)

*Please excuse errors in writing. I've written this without rereading it. Am exhausted beyond belief. Have no idea what's keeping me going at this pace. God how I love living!

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

To test or not to test?

Had a call from "Lady Brain" at Columbia University Medical Center. Forgot her name so Lady Brain works for me. LB does brain donation and is with the Columbia neurology research department. Have spoken to LB many a time and she helped me fill out my brain donation paperwork when I was living in New York. Incredibly sweet person. The call was to organize the "have brain, will travel" program after my death. To bad they can't ice cream scoop some of the dead area out now. Still working on weight loss and have shed 25 pounds. Don't think scooping out dead brain matter is cheating in the weight loss world. Hey, it's just as unnatural to eat a whole large pizza.

LB confirmed that I still wanted to donate my brain to science, so she'll be sending me the appropriate paperwork. We then started discussing my neurologist situation. Last time I spoke with LB was in NYC and I told her of my desire to keep Dr. Karen Bell on as my neurologist. Finding a neurologist who is experienced in FTD, knows me and whom I respect and trust is not an easy task. I take no medications and Dr. Bell knows my history and understands my needs and desires. LB also brought up me possibly doing some research tests which at the time I was fine with. I figure I would visit NYC every year or so and check in. Then again, the FTD monster can speed up at anytime. Then I would need help. Might be best to get a new Neuro here in Arizona. Oy, decisions decisions. What to do. A dilemma of gargantuan proportions.

Told LB of my dilemma and asked if she could check there at Columbia to see if anyone knew of an experienced FTD neuro here in Scottsdale/Phoenix. Then it happened. She asked. LB asked that if I return to New York would I be able to do neuropsych. testing. Upon hearing the words neuropsych testing I went into panic mode. PTSD, anxiety attack whatever you want to call it, came on fast and furious. It was an immediate deja vu of the tortuous times I went through. 6+ years of being misdiagnosed and put through every test known to man. 17 pills a day, SPECT, MRI and PET scans. 100 ECT's (electric shocks), VNS - Vagus Nerve Stimulator surgically implanted in my chest, spinal tap and on and on. The two tests that were the most brutal for me were the neuropsych tests. I've had two of them. Won't go into how difficult they were. All I'm going to say is never again. I've now come to a decision. NO MORE TESTS. I'm declaring now to the world. NO MORE TESTS. Unless there's a miracle cure or something to stem the progression, don't call me. I'll call you if I need something. As far as I'm concerned, I've paid my dues and done enough.

This is what I do now. Figure out how to get around obstacles caused by FTD/Dementia. Problem with my parking spot. I could never find it when I got home. Day or night. One morning I thought my car was stolen because it wasn't in my spot. Oops. Parked it a few spots away. Solution.  $1.99 for 2 reflectors. Now, day or night my spot is highlighted. You have a problem, don't bitch. Find a solution. Adapt and overcome.  I'm slowly losing my mind to FTD. Not going crazy.

Now you might think I'm selfish not wanting to participate in research that could help others and if so, so be it. My medical guinea pig days are over. I've had enough. I'm enjoying life and will continue to fight FTD and learn new paths to happiness and purpose every day. 

I think I do enough:
This Blog where almost 100,000 have visited
Howard's Brain film project 250-300 hrs filmed
FTD Patient Support Group
Other Support Groups/Forums
Speaking engagements
Brain donation to science

If God has the "do not enter" sign on heavens gate because of me not doing neuropsych testing, well at least I'm used to the heat from the Arizona summer.

It's up to each of us to decide when we've had enough testing. Once you have an FTD diagnosis you can stay with the medical testing programs and be poked, prodded and tested every year or more frequently for the rest of your life. Some people want yearly updates to how fast and where in the brain it's progressing.

Me, I've FTD. It's confirmed through multiple scans and tests. Everything else is ruled out except maybe a rare case of ingrained Flufferfoot. I'm done. All doctored out. No more. I'm going to live and enjoy my life for as long as I can. I take no meds for FTD. Zero. Is it easy fighting off the symptoms, hell no. But I've a wonderful life, it's my own and I'm making my own choices and am loving life. It's not easy, but incredibly rewarding in the accomplishments I've made and the contributions I will be making.

BTW - "NO MORE TESTS".

Howard

FTD Patient Story: Natasha Young

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard


John Davis -England new member-FTD Patient Support Group

Well after 2 years in the wilderness, not knowing what was wrong, but knowing it was something, I have only been here for a short time, and all ready feel at home. It’s been a lonely time trying to cover up all my mistakes, my confusion, my woolly headedness, trying to talk my way out of situations, getting more and more withdrawn, struggling with communication, putting up with the frustration of it and the outbursts of almost uncontrollable anger, while being passed from pillar to post and being diagnosed with extreme anxiety, OCD and PTSD. Going through CBT and therapies of all kinds and feeling like I was going mad as even making a cup of coffee was becoming a problem. Being able to relate to so many things I have read in the posts on here from you amazing people has made me feel human again for the first time in years. I truly no longer feel alone. Thank you for letting me become a member of such a wonderful community !!

Comments:

Howard Glick Eh, not impressed. Throwing your ass out :-)

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This is the second in our series of patient stories from The FTD Patient Support Group. Natasha Young is an incredibly brave young woman whose spirit humbles me. Natasha started showing symptoms of FTD PPA - Primary Progressive Aphasia at age 22. She is an incredibly strong FTD advocate. Last year Natasha created an FTD-PPA group on Facebook. She helps others learn to live with FTD-PPA and helps them learn how to communicate using speech assistive devices. Natasha also welcomes caregivers, loved ones and the medical community into her Facebook PPA - Primary Progressive Aphasia group.  I've met Natasha and I'm honored to call her my friend. 

There are 3 subtypes of FTD-PPA.  The variants are: Nonfluent, Semantic and Logopenic. Please visit AFTD  for details on these.
Howard

NATASHA YOUNG

My name is Natasha Young and I'm 27 years old. I go to College of Southern Nevada majoring in Deaf Studies. I used to be an Applied Behavioral Analysis ( ABA) tutor working with children with Autism. I was an ABA tutor for 6 years. My first symptoms of PPA started having trouble understanding conversation, forgetting words I knew, having trouble in college, and communicating. Family and friends started seeing these and kept calling mom. Finally, I went to see a neurologist. She did MRI, fMRI, and PET Scan. The PET Scan and fMRI showed PPA in Brock's aphasia. My experience with doctors has been good. Most of my doctors never heard of PPA/FTD or encountered with a person young in 20s. But, I educate them with AFTD and NAA resources. FTD has affect me to work. I no longer work with children with Autism. My family are loving but still in denial. I now relying more help from friends and family then before. I'm using speech assistive device to help me communicate. I was denied 3 times for SSI. Have a lawyer helping now. Last August, I started a Facebook group for PPA. It's called Primary Progressive Aphasia Support Group. I wanted to let people know that they are not alone with this sucky disease. I also want caregivers and speech therapist know PPA. My goal is to keep fighting this PPA, educate, and keep enjoying life.

Wrote a poem that I like to share about my PPA. 

Primary Progressive Aphasia

Primary Progressive Aphasia what is that? What does PPA mean? Is it good or bad? Do I really want to know?

February 8,2011 is the day I will not forget or look forward to every year. It is the day I heard you from my neurologist mouth telling mom and I you. It is the day I felt like being punched in the stomach trying to get my breath back.

Research, research, research goes on for days and days trying to understand you.

Speech therapy, speech therapy for 6 weeks, 3 times a day I go trying to slow you down, learning ways to communicate, and learning how to use my Dynavox that will be my voice.
PPA, I didn't believe you nor do I want to accept you.
PPA, you make me sad. I cry,cry, cry. I hate how you are taking my speech and seeing me struggle to say words correctly. I hate how I see my friends and family sad face looking at me struggle to understand and trying to get my words out of my mind in perfect order. I feel my mind looking for my lost files that I once knew. The world sees me as a stupid person. Yet, deep inside I am smart! I am still Natasha smiling.
PPA, you are helping me help others to fight, fight, fight! You taught me to educate, educate, and educate this world. You taught me to enjoy my life, get closer to my Heavenly Father, and keep on communicating.
PPA, I wish the world would understand and help people with you.
 PPA, I shall never forget you the funny times when words come out funny and the laugh I get. When the time comes where you take over, I hope that you will be cured and the world be understanding and you will not be some strange word coming out of a doctors' mouth.

FTD-PPA

NONFLUENT / AGRAMMATIC VARIANT PRIMARY PROGRESSIVE APHASIA

Primary progressive aphasia (PPA) is a language disorder that involves changes in the ability to speak, read, write and understand what others are saying. It is associated with a disease process that causes atrophy in the frontal and temporal areas of the brain, and is distinct from aphasia resulting from a stroke. In 2011, criteria were adopted for the classification of PPA into three clinical subtypes: nonfluent/agrammatic variant PPA, semantic variant PPA and logopenic variant PPA (Gorno-Tempini, Hillis, Weintraub, et. al).

The presenting feature in people with nonfluent/agrammatic PPA is deterioration in their ability to produce speech. These patients first become hesitant in their speech, begin to talk less, and eventually become mute. Current research suggests that the fundamental loss in nonfluent/agrammatic PPA is deterioration in knowledge of the grammatical organization and the production of sounds for language.

Unlike other FTD subtypes, nonfluent/agrammatic PPA generally does not produce changes in behavior or personality until later stages of the disease. Most people with progressive aphasia maintain the ability to care for themselves, keep up outside interests and, in some instances, remain employed for a few years after onset of the disorder.

Key Clinical Features

•    The aphasia in nonfluent/agrammatic PPA is experienced as hesitant, effortful speech. Despite this difficulty, it appears that patients’ ability to comprehend what others say is preserved longer, though this is eventually lost, as well.

•    Increased difficulty producing speech due to weakness or incoordination – speech sounds weak, imprecise and uncoordinated.

•    Reading and writing abilities may be preserved longer than speech, but these eventually decline, as well.

•    Mutism eventually develops with progression.

•    Difficulty swallowing may develop late in the course of illness.

Neuroimaging studies demonstrate loss of brain volume in the left frontal and parietal areas on an MRI scan and/or decreased neural activity and blood flow, especially in the left frontal lobe on functional imaging (e.g., PET or SPECT scan).

In later stages, clinical features may include ones found more commonly in other FTD subtypes, particularly extrapyramidal syndromes such as corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP).

Key Pathologic Features

Pathology in PPA is most commonly abnormal tau collections (FTLD-T). This abnormality in tau differs from that seen in Alzheimer’s disease. We especially anticipate abnormal tau in cases of corticobasal syndrome, Pick’s disease or progressive supranuclear palsy. Other cases of PPA may harbor TDP-43 deposits (a different type of protein abnormality from tau).

Genetics

Nonfluent/agrammatic PPA can be sporadic, familial, or hereditary. The majority of cases are not hereditary.

Treatment

As with all forms of FTD, there is no cure for PPA, and in most cases its progression cannot be slowed. Physicians suggest targeting behavioral disturbances as necessary (e.g., obsessive-compulsive behaviors, such as hoarding or craving sweets). Some physicians will give a trial of amantadine to ease the flow of speech, but this use has not been proven yet in a formal placebo-controlled drug trial. In one placebo-controlled randomized study, the cholinesterase inhibitor Reminyl (galantamine), significantly slowed deterioration and in some cases improved language function.

Management and Prognosis

Although no studies have shown improvement or slowing of progression, when a patient works with a speech and language pathologist (SLP), many centers work with SLPs to hone the diagnosis of PNFA or semantic dementia and to research potential therapeutic interventions.

Many PPA patients develop the behavioral, social and/or motor complications seen in other forms of FTD. In these patients, prognosis is obviously poorer and management more complicated. Patients who do not develop these additional symptoms are able to preserve their independence and active lifestyle for a longer period of time.

Reference: Gorno-Tempini, M.L., Hillis, A.E., Weintraub, S, et.al. Classification of primary progressive aphasia and its variants. Neurology; March, 2011.

For additional information and support:

The Association for Frontotemporal Degeneration
Radnor Station #2, Suite 320
290 King of Prussia Rd.
Radnor, PA 19087
Toll free: 866-507-7222
E-mail: info@theaftd.org