New Diagnosis

Ever feel like the universe is just fucking with you.

Ten years ago I got sick and my whole world went upside down. Never knew what hit me. Lost my successful longterm career, family, money, soulmate, friends and health to FTD. Lost everything a person could lose. There is no recovery from FTD. There are no medications or therapies to slow, stop or reverse it's progression. You will continue to lose your mind till your mind till your dead. 

What I did learn is not lay down and die, not be depressed, not mope, not feel sorry for myself and never ever give up. Whatever obstacle gets in my way, I will figure out a way to overcome. If I can't overcome it, I let it go. I forgive myself quickly for the actions I can no longer control. I believe everyone has a right to happiness and purpose. Both happiness and purpose don't just show up at your doorstep, but you need to fight for both every moment of every day. I do everything I can to help others with FTD as well as other walks of life get on the same path I'm on.

I also have learned that I've a sense of urgency that drives people crazy. I'm on the clock. That clock is FTD and it's ticking down.  I've no time or patience for bullshit or lackluster efforts. 

I created a new life and started over making this blog my core and expanding out from here. I've risen to become a successful writer/filmmaker amongst other things. I type and film on a daily basis. On moving day from NYC I was filming while walking up stairs and fell. Both camera and I got broke. Joe Becker, the filmmaker got me a new camera in 2 days. Wish the same could be said for my body.

It's been about 3 months since I fell and injured my right hand. The pain and swelling have gone up and down. I've tried to ignore it but it's reached the point that even shaking ones hand has brought me to the edge of tears. I figured it had to be a broken bone or ligaments. My left hand was a wreck with 6 of 8 bones being broken or dislocated. Have been on and off painkillers for years. Since damaging my right hand, I've been forced to use my left and now it's 24 hrs. of chronic pain.

I know there's a huge stigma about the dreaded painkillers, but they are relief now. I could write an intellectual article on how Vicoden is working pain relief for me with FTD, but no time now. Found a doc and he sent me to an orthopedic surgeon. Dr. Thull was voted one of the "Top Docs" in Phoenix for at least 3 years straight. I already had the mindset that I had a ligament or bone damage and needed surgery. At one point I found myself sometimes not being able to wipe myself with either hand. Chop the fuckers off and give new me hands. I think you get the point.

Dr. Thull had the X-rays and examined both hands. Left hand beyond repair. The right hand with the extreme pain came a shocking diagnosis. Severe Arthritis and a good chance nothing will help. I was in shock. The fall with the camera brought about a condition that was there. Surgery would not help. He told me to try Aleve for 2 weeks and if that didn't work, cortisone shots, but didn't know if that would be successful.

I left in a state of shock and filmed my thoughts and reaction for  "Howard's Brain" at a bar with a Diet Coke. I've busted my ass beyond belief to recreate my life and exist with FTD for as long as I can. My life consists of typing and holding the camera. My new career is now over. Now it is painful to type and I can't hold a glass of water in my right hand, never mind the camera. I'm totally devastated. The Universe hates me. Some people that have heard have wrote to me about use Dragon speech to text software. I love typing my expression and emotion. Love the sound and feel of pounding away on my keyboard. Now what the fuck am I going to do? Start a new career in crosswords and puzzles. Maybe I can become a clown.

Tell you what I'm going to do. I'm going to keep on keeping on. I'm not going to increase my painkillers, in fact I'm going to decrease them to there previous level that's helpful but not interfering with my life. I am going to keep blogging but will be cutting back. 

My new main focus will be my book, "I'm aware that I'm not aware" each morning 7 days a week. My book I believe will not only help with FTD awareness, but help anyone dealing with a chronic disease. My main focus will be my book, then my support group which helps many including me and the long term project: "Howard's Brain". Am also going to be working on booking speaking engagements. I've applications out now to various groups and Universities. Will soon have a highlight disk to send out. Don't think there's any disease that can ever shut me up.

I might be crippled by pain and movement but I'll find a way to type. I'm in pain right now. I don't give a shit. I'm sorry Mr. Universe. You better come at me with more than FTD, Cancer, Heart Disease and now Arthritis. Anything short of Leprosy with body parts falling off and I'll keep going. In fact, I'm more determined than ever. 

Now I'm going to pull an FTD reversal and say thank you God and the Universe for the tools and help you've given me. In the last 2 years I've accomplished more to make a difference in others lives than I could've ever dreamed of. 

I was walking in pain for 3 weeks from buying sneakers 2 sizes to small. Thank you for putting that sales guy in front of me who told me I was in pain because my feet were busting out and he replaced them. 

Thank you for having Kevin Smiley inspire me by losing 25 pounds with FTD. Up to then it's just docs saying, Yes, those with FTD gain weight from sweets and carbs. I've now gone from 246 pounds in NYC to 211 pounds this morning. Can't figure out how many pounds that is right now, but it's a lot and I'll keep going. 

Thank you for giving me a firm diagnosis with my hands. I know what I'm facing and I will not stop any of my work on projects. Might have to shift a bit, but I'll keep going. There's always a way to get things done and I'll find it. I'll walk into that Valley, facing the pain and keep going. Why? Because I am the baddest mother fucker in the Valley.

Howard

* 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

I could use help. Am on Social Security Disability with no other help. Gift cards, etc. They are deeply appreciated. For those that want to help 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

Fighting the judgment battles

Was out on a date last night, a first date. Thank God for first dates, since I rarely make it to a second. Might as well be a Vampire. I'm funny, charasmtic and intelligent like a Vampire. But, do you really want to be part of my world? I've now lost 33 pounds since leaving NYC, so I might be even considered decent looking. I've had some remarkable accomplishments and really am a good guy. But, do you really want to be a part of my world. Dating me is an adventure. I've never read the FTD dating protocol book. Don't think it exists. It will have to be a chapter in my upcoming book. Probably under the heading of my new dating service D-Date or Dementia Date.

How people  handle disease is how they handle life. Life is the ultimate curveball and FTD is the pitch. I like how the previous line sounds even if I haven't a clue if it makes sense.

Last week I wrote about the sneaker incident. I bought sneakers 2 sizes to small. Didn't pay attention nor care at the time of purchase. Just wanted to get back to my writing at Starbucks. Wore them for three weeks in extreme pain. Spent a ridiculous amount of hours buying bandaids and scheduling when to put them on, adjusting the laces and even figuring how best to walk so they didn't hurt me. My reasoning and judgement are off. Didn't think at all that there was a size or fit problem.

I tried on the sneakers and took a couple of steps, paid and left. It wasn't impulsiveness as much as bad judgement. Should've walked a bit, checked the toes etc. When I returned them I was shocked when the sales guy pointed out my feet were busting out of them. The cost was $50. I've had the new ones on for days now and it's so nice not to be in pain. I would've limped around in those shoes till they were worn out I was bed bound. I'm not looking after myself the way I should. Right now my feet are perfectly fine, but typing has me in pain that would cause any normal person to stop immediately. I have slowed down with my blogs, posts and responses. My new doc had both hands and wrists X-rays. One shows severe damage and arthritis. 6 out of 8 bones have been broken or dislocated. Multiple surgeries and very limited movement now. Yes, constant pain which is worse now because of extreme pain in the other hand. So now I'm using my severely damaged hand because I can't use the other and now that both are killing me. Guess I shouldn't complain. It could be worse. I could be suffering from FTD, cancer, heart disease or flufferfoot. All diseases whose asses I've kicked in the last couple of years. Guess this is the part where I should be throwing a pity party. Tough times, eh. Two years ago I was out of the hospital after my cancer operation, alone like now and doing the wash in the basement of my NYC apartment building. My catheter was ripping my penile skin and it was bleeding. I'll take the hand pain.  Hey, I'm patient, caregiver to myself and tireless awareness advocate asshole. So do I deserve a party or some common sense? I'll take the common sense. Have an appointment with an orthopedic doc this afternoon to figure out what to do. In the meantime painkillers are giving me some relief. 

The whole sneaker incident bothers me. Shows me I'm off kilter. I know it, but who likes to face it. How many sneaker incidents are there? I've no idea. Comes with the territory of having a disease that effects your judgment. I know my judgement is off, but I'm doing the best I can and will continue to do so. My main motivation behind going to docs is because I'm in so much pain typing. Typing is my life and I've a book to complete and a movie to make. BTW - Just filled up another memory card for the FTD documentary, "Howard's Brain". Can't hold the camera because of my hands, but have been using a tripod.

* 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

I could use help. Am on Social Security Disability with no other help. Gift cards, etc. They are deeply appreciated. For those that want to help 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 with FTD in Arizona

Howard

Pain

Bought a pair of sneakers a few weeks ago. I usually act pretty fast when people make comments. Someone sort of hinted by telling me I could put my sneakers in a bucket with bleach to refresh them. Bottoms were worn. They sort of ran away on there own long ago, so I took the 50 yard trek from Starbucks to Big 5. Big 5 is  the "Staples" of sporting goods. The 10 year old customer service rep helped me. Bada Bing, Fifteen minutes later was back typing at the Starbucks table my butt is now acquiring.

A couple of days later they really started hurting. I'm no hero, but seems my body has been crackling from pain for a while now. It's not just the pain. With FTD your ruminate on the pain, which makes it worse. I ignored it hoping the sneakers would break in. Instead my feet were getting broken in. I started putting on bandaids when my socks were getting stained with blood. Of course the story within the story was buying a box of bandaids. This included trips to "Fry's", "Walgreens" and "Walmart". What type, size, cost etc. Nothing is simple in FTD world. My morning routine now changed to include band aiding each morning. Of course it's a domino effect was now I didn't have anyplace to throw the bandaid wrapping, ends or used band aid. I've bought minimum 4 garbage cans and returned them all since moving. To tall, to small, color etc. Now I've these annoying little pieces from bandaids. Found an empty plastic bag to throw them out it. Days later I discovered my unopened meds were in that plastic bag with bandaid pieces. Hey, everyone hates those little pieces that fall on the floor etc. Can't they invent edible wrappers. The bandaids helped, but my feet still hurt and I needed to adjust how I was walking. 

Now it's three weeks or so later and I'm back in Big 5. Not because of the sneakers, but need to refresh another of life's items that wear out. I'll spare you.

While looking a salesman asked if he could be of assistance. Since my feet were hurting I went right into how I purchased the sneakers 3 weeks ago and they hurt and are cutting into my foot. Could anything be done? Chris told me he could see by looking at them that they were way to small and stated I should've had him help me. Ridiculous. I told him someone else helped me and I came to Big 5 and paid more for sneakers not expecting experts, but a bit of help. Hey, I expect to pay a bit more, but get product that works. Otherwise, instead of dealing with brainless twits, I might as well save money and order from Amazon or Zappos. He asked if I had the receipt. No, and I told him I had dementia. I don't know if Chris realized it, but we were heading into an FTD realm of no return. This was about to get out of control and I really didn't give a shit. We went from bad sneakers to me spending $50 and getting ripped off from incompetence. Unacceptable. 

Chris was a good manager/guy. He had me sit down. Brought out the same sneakers except 2 sizes larger. Took me to the register and made an exchange. Wearing them now. It's so nice not to be in pain. Big 5 has now earned a loyal customer instead of the worst enemy in the world. An FTD'er.

I'm aware that I'm not aware.

*Just wanted to say I do take total responsibility for this whole thing. If I wasn't sick, I'd have realized when I initially tried them on that they didn't fit. I wouldn't have worn them for weeks in pain. They were ridiculously tight. In fact, they were crazy tight. What can I say it's the disease, FTD. FTD causes your judgement to be totally off. *Added on after article was written.

Have been is a tremendous amount of pain lately. Both hands. wrists killing me. X-rays show extreme damage to one wrist. Had 6 of 8 bones broken/dislocated. Multiple incidents and surgeries with severe arthritis now. The other I can't hold a glass of water and it hurts to type. Have an appt. with a specialist on Monday. Have to actually use my other hand to release the emergency break. Shifting hurts like hell.
Used to take painkillers, but stopped. All the public stigmas and my girlfriend used to drive me crazy. Back on them now and I have relief. I can't tell you how nice it is to have relief from chronic pain. I've a new doctor now, Dr. O'Leary is a good guy. Was interested in FTD and me. Glad I didn't have to fire another one.

Onward we forge with new possibilities opening before my eyes. Will make this blog short. Yes, I'm in pain.

Howard

Alzheimer's Foundation article on FTD

FRONTOTEMPORAL DEMENTIA:
A DISEASE STILL CLOUDED IN MYSTERY
The Alzheimer's Foundation of America

PLEASE ENJOY THIS ARTICLE ON FTD FROM THE 

ALZHEIMERS FOUNDATION of AMERICA 

I ADDED AN ARTICLE FROM AFTD AND 2 FROM FORBES. THE PURPOSE IS TO SHOW HOW PEOPLE CAN ADJUST TO LIVE WITH FTD.

THANK YOU

Please scroll down for full size article

-------------------------------------------------

FORBES ARTICLES

    Alice G. Walton, Contributor

    I cover health, medicine, psychology and neuroscience.

Brain Ventures: A Businessman's Battle With A Rare Neurological Disorder

If you start chatting with him at the localStarbucks where he hangs out six days a week, you might not realize much was wrong with Howard Glick. Intense periods of working on his laptop punctuated by animated banter with the other coffee shop regulars make the 53-year-old native New Yorker seem like a regular Joe.

Howard tells people that he is a retired businessman who now devotes his time to a medical blog, which is mostly true. He is a former regional director of sales for a successful tech company. And he does have a blog that educates people about a medical condition.

But there’s a lot more to the story, 

Click for full Forbes article 11/2011

Inside The Mind Of Frontotemporal Degeneration: A Patient's Story

The first of the FTD patients talks about what it’s like to “live a life that’s slowly slipping away.” More patients will share their stories in the coming weeks.

 

A self-professed pain in the butt, Howard Glick, 54, has shaken up the FTD community, mainly for the purposes of bringing patients together and bringing attention to this little known brain disease. Last year, he launched a blog to chronicle his own road with FTD, and he is now, in concert with the Association for Frontotemporal Degeneration (AFTD) and producer Joe Becker, making of a documentary titled, appropriately, “Howard’s Brain.” He also heads an online patient support group for “FTD’ers,” the first of its kind. Caregivers are not allowed to join.

When asked to describe what it’s like to be “inside” a brain with FTD, Howard speaks candidly. “I 

Click for full Forbes article 5/2012

I live alone and could use help. Am on Social Security Disability with no other help. Things are real tight. Gift cards, Starbucks, Costco, Trader Joe's, Outback, cash are deeply appreciated. For those that want to help there is a yellow donation button on top of the page. 

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

howardjglick@gmail.com

* I run a private FTD Patient Support Group on Facebook. It is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. There are 80+ members from 10+ countries. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.

Howard

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