Tuesday, September 2, 2014

Howard Glick FTD Update

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

Been shedding tasks for a while now. Long gone are the days of checking this blog multiple times a day how many have visited and what countries there from. How exciting it was reaching milestones of visitors, receiving all your supportive emails and winning multiple awards. Just realized this blog reached 150,000 visitors. Felt good turning the tables on an insidious disease that sucks the life out a person and making myself a vehicle for awareness and hope to many.

10 years ago FTD entered my life. Forced to leave work on disability being misdiagnosed as bipolar I just disappeared from the 17+ year career I had. My career started in NYC and culminated in Seattle.  Then I just disappeared. Never returned calls from friends or associates. My absence was a mystery to many.

Some months ago I was contacted by an old colleague and close friend Dave Ashcraft who had looked me up on the web. I used to manage a string of independent dealerships in North America for a Japanese business equipment manufacturer. Dave is now the VP of of the largest independent dealership in the country, Witt Company, that has dealerships across the Western US including Phoenix. A few weeks ago I was contacted by the President and owner of the company Bill Witt. Bill wanted to come visit me in Phoenix. We met at the Starbucks I frequent. I worked closely with Bill for years and years. You couldn't find a fairer, more honest and astute businessman anywhere. He was also a huge handful to work with. Complicated, but you'd be hard pressed to find a finer individual.

Bill entered Starbucks and his first words were, "Howard Glick, the last time I was with you was March 2x, 200x at the Metropolitan Grill in Seattle. You took me and Gail (wife) out for dinner and bought us a bottle of Jordan wine. Told us you were sick and had to leave Riso.”  Then I was gone.

Bill rehashed mutual colleagues and friends across the country that I've not thought of in years. Some I remembered, some I didn't. Everyone I used to know was doing well in one form or another. It was good to hear. Bill also discussed the years I worked with him. Told me I was the best manufacturers rep he had from the company I worked for and that I always had his companies interests in the forefront - even if it caused me to have problems with my company. I broke down a couple of times. Tried to explain FTD. Tried to explain how I rarely leave my apt., curse out old ladies without realizing I'm doing anything wrong, frequently eat spoiled food and make inappropriate sexual remarks. Also that I now have frequent swallowing/choking issues and balance issues. Explained how I lost my disability from Unum because I was misdiagnosed which has me living now on the poverty line. Bill asked about longevity. I sort of lied and told him I'll be around for a long time. No one has a crystal ball with FTD, but FTD is marinating nicely and I know my time has become limited at best. At least I'm hoping to move on soon.

Bill told me if there was an emergency and I needed some financial help, not to hesitate to call and actually called someone at the company in front of me to let them know if I called to send out help. I was deeply moved at the gesture, but anyone who knows me knows that I'd be homeless before I'd make that call. Bill said he would visit me on his periodic trips in. There are no words to describe how much Bill's visit meant to me. It's soul shaking what I've lost since we worked together.  Sitting here at Starbucks crying as I type. 10 years ago I had a consistent six figure income, kids, and a woman I was madly in love.

Yesterday I received an email from Dave Ashcraft from the same company in Seattle saying he would be visiting me in 4-6 weeks. “You were one of the best salesman I've ever known”. I'm looking at my schedule and I'm going to plan on coming down to Phoenix for a long weekend in the next 4 - 6 weeks. I'll let you know the exact dates."

Was recently contacted by a childhood friend. I haven't seen Peter Herzog since I left for college 35+ years ago. Peter came from Boca Raton, Fl. last week to look and possibly move to AZ. Peter's son was amazed how we just sort of clicked again like many of us NYC Washington Heights alum do. While we were in the car I pointed to a girl and mentioned what a great ass she had. Both Peter and his 23 yr. old son berated me that she looked really young. Age just didn't click, didn't cross my FTD corroded mind. Of course I'm aware now that she was just a kid and am once again on the edge of tears as I'm typing. 

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

I check out all woman indiscriminately, no matter what the age. FTD has made me mixture of hypersexuality, no filter - causing inappropriate remarks and apathy - not caring at the time I make those remarks. People write to me about there loved ones that aren't aware like I am and how lucky I am. I'd be a lot luckier if I was dead.

Problems with my neighbors continue with me being the neighborhood nut. Haven't been in a fight since I was 13, have almost come to blows multiple times in as many months. Requested from the management that I switch apt. They said no. Came home to find SWAT in my two story building. The police are always around. Took away one problem neighbor below me for 1st degree attempted murder, kidnapping, assault + many other charges. Police interviewed me for an hour. Heard he's facing life in prison. Guess my apt. community is nice if your into crack and crazies. The online reviews call it the "Scottsdale Slums." What can I do, I'm trying to live and stay alive. Pain is constant with frequent continuous headaches and severe arthritis. Have stomach issues because I constantly eat what's ever laying around. Don't leave the house much because I'm me and find myself in a life and death battle with FTD's No. 1 enemy, depression.

Terri and I split up. Its obvious that I'm declining was getting to rough. I downgraded us to friends. No one can ever find a more loving, caring and loyal person to be with. Neither of us expected my health decline to speed up like it has. I'm not selfish enough to put her through FTD hell. We did have spectacular times while it lasted. I'm constantly having issues with swallowing/choking as well as recent balance issues that are getting worse. If I was a horse, I wouldn't be typing right now :-)

I live on the 2nd floor and balance issues are causing it to become extremely hazardous going up and down the stairs. This has been happening for a while but realization that I might get hurt is a very scary and real fear. If I get hurt, I'm finished. Have not one contact of person to call. When I was with Peter last week I almost got run over because I couldn't manage to get up on the vehicle we were getting on. It almost backed over me thinking I was inside. Screams saved me. Don't know how to describe the feel in of having restless leg syndrome from head to toe.

Think I mentioned earlier that I just signed a new lease :-) Yesterday I went back in and asked them out of it because of my health issue. They are going to let me know, but know about FTD and that I'm pretty sick. I'm thinking of moving to a different community where there are a different element of people. I can't deal with the criminal element, drugs etc. Only problem is my rent will go from $700 to $900. Can't afford to move and can't afford to stay. I'm very, very, very frugal with money and am in the negative each month. No reason to budget since I only have what I have and there is nowhere to cut back. Will never beg or ask friends for money. For me money is like musical chairs. When the music stops and there's no seats, game is over and I check out. Won't go homeless or assisted living route. Don't mind my FTD rant. Welcome to my world.

Happiness is overrated and I can't remember the last time I was really happy. Bill Witt and Peter Herzog gave me wonderful reminders and glimpses of my life gone by. I've had a Life. A wonderful life. No regrets in life. I've 2 wonderful children I rarely see and still have the opportunity to continue on somehow and do work that will make a difference in peoples lives.

Somehow I'll try and keep carrying on. Will try and keep this blog going and return to filming for Howards Brain, the FTD documentary that I've close to 300 FTD hours filmed. Filmed 45 minutes a few weeks ago. First time I filmed in months. lol This is my first blog in months. Guess I've people out there, but have never felt so alone in all my life.
FTD causes behavioral issues that are devastating to FTD'ers and the loved ones around them. Depression and FTD go hand and hand. Many take anti-depressants, anti-anxiety, antipsychotics etc. to help level the playing field. I take none. From this you see my highs and lows. Functioning that permits me to write this blog, run my 2 support groups and do what I do. My life would be easier flat from mind dulling drugs and there's nothing wrong with chemical help to make an FTD'ers life easier. But that's not me. I don't do "easy". Never have, never will. 

Been sick a lot lately with my stomach. Just keep eating bad food. Made tuna at home. Don't know if mayo was bad, tuna left out etc. Was pretty sick. Of course it was in the fridge and ate it again days later. Same result, sick again. Often leave food out and eat it days later without paying attention. I know it's not good, but don't even think or care. Just hungry and it. Eat out mostly to try and keep from getting sick. Usually cheap mex etc. Glad I've FTD or I'd think I was losing my mind. 

We often hear those with FTD are unaware there's anything wrong with them. People around me still don't realize there's anything wrong with me most of the time. I think :-) Well, FTD has gone from lurking in the recesses of my mind with an invisible attack, to an all out frontal physical assault. Am hoping to bounce back. Almost didn't make it this morning, but an early email from the director of AFTD got me going. 

Routine, routine, routine. 7 days away. It's the only way I know to keep going. So hard now. Have been back at Starbucks for about a week now. Have also filmed 1.5 hrs for "Howard's Brain" documentary. Am going to fight like hell and return to my 7/7 - 7 days a week, 7am Starbucks routine. Will do my best to get back to consistent blogging, though I've no clue if..........

On another front, preliminary discussions are now under way for an FTD group home in the Phoenix area. Those with real interest in this please contact me at howardglickftd@gmail.com  I'm also going to be the guest speaker at the "Professional Association of Senior Referral Specialists" later this month and this will be one of the topics I will be discussing. 

I want to thank everyone that has helped me with your support over the last years. Your kind communications and financial help has enabled me to do a few good things in this lifetime. Will try my best to carry on rocking and rolling.


Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver. I'm not starving, but am in the minus everything month and cannot afford the medical help I need. For those that want to help, there is a yellow Donation button on right top of the page. You can choose a recurring donation each month of any amount, which I would be eternally grateful for. You can also mail to my address below with gift cards, checks or cash. All help is deeply appreciated:

Howard Glick
7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

Tuesday, April 8, 2014

FTD and Death with Dignity

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

I'm beat to shit. Just so tired of living I've FTD but don't ever really feel sick. Wake up call is swallowing issues and choking daily. Houston, we have a problem. Guess there is something wrong with me. Scans, neuropsch testing and years of testing and medical abuse culminating in an FTD diagnosis might be real. Feeling death knocking for the first time. Living with this shit called FTD sucks and is exhausting. 

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

Was talking to my friend Marc last week. I've no Power of Attorney, no will or end of life plans. No list of people to be contacted, no death plans. My life and death is just one big FTD fucking mess. Don't have shit organized. Trying, but have been trying for years.  Just can't accomplish shit. Screwed up my son's ticket to come visit last week. Booked him to come in October instead of now. Corrected it except the the additional ticket is still charged. Guess I need to go FTD some asses. Received a comforting letter from a friend saying everyone screws up plane tickets. Not me. Why not me. This is Howard Glick who use to fly 120 flights a year, 200+ nights in hotels, car rentals and business dinners planned both domestic and foreign. My 17  year career and I booked every flight, room etc. Guess what? This was just my commute to work. This was without my demanding job. Now I can't even book ONE fucking flight without FTDing it.

Is it death with dignity or life with dignity? Haven't a clue. Can't remember or figure out aphorism's anymore. Just another loss to FTD. FTD is a universal fuck. Not only do you get stripped away of all that's good and wholesome in your life, your family and loved ones get robbed as well. It's a one way street that leads to Hotel California or assisted living before your time, more misery and then death. Excuse me for being the purveyor of doom, but this FTD we're talking about, not flufferfoot.

So what's precipitated my thoughts of checking out of this glorious life? Is it the cacophony of life's missteps in the last 10 years. Is it because I'm beat to shit by life, exhausted and am looking for the long rest that accommodates death. Anyone in the unfortunate world of FTD is beat to crap. Patients, caregivers and family members are rocked and rolled. Everyone else gets to somehow sigh, breathe and  try to put there lives back together. We become worm food.

I've a ton of symptoms, issues but they like awareness of FTD keep slip sliding away. Yes, in 3 years since diagnosis I've beat Cancer and Heart disease. FTD, well it's stealing from me blindly like everyone else with the disease. Three months after FTD I was told I had prostate cancer. at 53 my choices were radiation seeding, slice and dice or robotic surgery. My only care and question was, "What will give me the best chance of having sex again and how long will it take."? Cancer, big deal. Can only deal with one terminal illness at a time. Sex, well can't very well deal with the FTD hypersexual symptoms that plagues me with a  Cancer/ FTD crossover. 2 days after prostate surgery and removal was at Starbucks blogging with my catheter wagging like dog leash. Got past that and was having sex months months after it was robotically removed. Next up, heart. Went to the  Cardiologist alone and he went over some stuff. Hadn't a clue what was going on. All I knew is I showed up at Columbia in NYC the next morning. They looked at me cross-eyed that I was alone and really hadn't a clue what was going on. Next thing I knew I was on slab having 3 stents and other stuff done. The surgeon did watch the 'Howard's Brain" trailer and we did discuss it the next day. Did my 2 cents for FTD awareness. Friends were shocked. Big deal, they didn't even want me to leave the hospital since I was alone. Told them I'd take a cab. Right,  took a bus. Was back at Starbucks a day later doing my FTD blogging.

So where am I going with all this. I've absolutely no fucking idea. I'm sitting here at Starbucks pretty fried at 8:40am and not a clue to what I'm writing. Totally lost. To tired to go over what I've written and  figure out what I'm writing about. My day is over and it's a Saturday. Usually I don't write on Saturday. Saturday is date night. I get together with Terri and every Saturday night is what I consider our first date. I gear myself up no matter what. By gearing myself up doesn't mean I'm not an FTD mess. Am lucky that Terri has patience with me. I try my best, but though Howard rules, my unruly sidekick FTD goes from hanging out to taking over. Time to checkout of Starbucks. Hands in pain, I'm in space and life is beautiful. Why? I got out and did something purposeful. The bane of my existence isn't me, it's FTD and I'm kicking it ass.

Now it's a couple of days later after the above. Still feeling beat up by life. Not sorry for myself, just beat up. Am lucky that a generous person bought my kids tickets plane tickets to see me. My son will be coming next week. Have seen my kids 3 times in 3 years. FTD bankrupted me like it does many others. Want to take my son to a baseball game, but so confused as to how to buy and if I can afford tickets for us. Went to Costco yesterday, they sell Arizona Diamondbacks tickets. Put a few things in the wagon, got confused, overstimulated and overwhelmed and walked out leaving the wagon behind. I probably do that 80% of the time wherever I go. So tired of this life. Have taken my son once in his life to a baseball game. That was in NY a couple of years ago. Had a choice between two games. Checked the weather and found tomorrows game was 75 degrees with a 30% chance of thundershowers. The day after clear and 80 degrees. Both were night games. Of course having FTD and being blessed with impeccable reasoning and judgement I chose the cooler night with chance of thundershowers instead of clear weather. Players never made it onto to field. We laughed and had a bit of fun. We sat there for an hour or so in the pouring rain before the game was called a rainout can cancelled. We were also in a 95% empty stadium. Now I'm living in the desert so I don't have to worry rain, but making even little decisions or trying to organize anything are crippling tasks. Not sure if we'll make it to a game next week. I did check and Arizona is playing the NY Mets. It would be ironical to see the mets after being at Shea Stadium for the rainout.

Went to a Groupon Pizza/Italian restaurant with Terri last Saturday. We couldn't sit outside because they had a wedding party complete with tuxes and a priest that booked the outside. I wasn't a happy camper. We sat a the bar with annoying rap music now waiting for our pizza to go. Couldn't take it so we sat outside waiting for the pizza. Some wedding party girl all bush eyed in a wedding mesmerized trance came to us with a tray with shot glasses of bubbles or something ridiculous like that. She asked if we wanted to toast the bride and groom. "Fuck them" I said. Her face instantly turned to horror. Couldn't give a shit that I said it then and couldn't care less now.

Just a day in the life of this FTD'er. What happened to Howard Glick and where has he gone. Truly tired of this shit that's FTD and me. People tell me I'm the most tenacious person they've ever met. Been hearing it for as long as I can remember. I will keep fighting to the bitter end, but I am beat to shit. Guess someday I'll die. Can't wait. I need the fucking rest. I'm also so sick of these fucking headaches!!

Was going to get a haircut this morning. Starting to look like a wild man, but I blogged. To tired to drive and I'm totally out of it now. Want to leave my Starbucks fiefdom, but drained. 10am here an I'll head home soon as I can move. Writing this gets harder and harder. Not even sure how I do it anymore. I'll get home which is 1/4 of a mile and won't leave my apt. till tomorrow when I start all over again here at Starbucks. Not even sure why I write this shit anymore.


Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:

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

Friday, April 4, 2014

FTD and Swiss Cheese Memory

Received an email a few weeks ago from an old work buddy. He Googled me and tracked me down through my blog etc. Haven't spoken to Dave in about 10 years. We we're very close. I sort of just disappeared off the map at work. Never knew what hit me.  I was out on disability and Tamara used to give me messages that Dave and others used to call. I never called anyone back. Besides being in the beginning stages of FTD, I was also drugged up out of my mind for the 6 six years being misdiagnosed as bipolar. A SPECT scan, which is less definitive than a PET scan showed FTD 2006.  It was normal  but showed reduced truer amounts in the anterior temporal and frontal lobes. Due to lack of FTD awareness it wasn't followed up upon until 2010, when a PET scan clearly revealed progression and FTD. Lack of awareness which caused me to lose years of my life in a medically induced fog and lose my work long term disability, because Unum decided they could get out on a legal technicality. I'm hoping this blog is increasing awareness which will lead to a quicker diagnosis of others.

Dave called me and we caught up. It was great hearing from him and I was glad he was working with the same company in Seattle Wittco. Another old buddy Sean was still there and it was good to hear they were still working for Bill Witt. Bill Witt was an astute, savvy businessman, politician and very fair to his workers. I remember battling him back in the day, but don't remember exactly what. I wasn't surprised at all that the same crew was together.

Mid-conversation Dave brought up how we shared Seattle Seahawks season tickets back in the day. We discussed the Seahawks a bit. I was a bit shocked because I didn't remember having tickets with him. In fact, I didn't even remember going to a football game with Dave or anyone else. I didn't mention to Dave I didn't remember. It shocked me I didn't remember and it's so hard to say, "Hey, I don't remember that or I'm not following you." Many of us with FTD just keep going when we run into situations like this. I did speak to my daughter Chelsea later that day and she told me I used to take her to football, baseball and basketball games when she was a kid. Don't remember a single time. Living with FTD is a hell of a thing.

When you have FTD, alzheimer's or dementia, many try to make you feel comfortable or make light of it by saying, "I forgot my keys this morning, I must have dementia to. ha, ha" Fuck you, you don't have FTD/dementia and you have no idea how hurtful that is and how you make that person want to isolate themselves. You don't go up to a person with cancer and say, "I've a new zit on my face, so I might have cancer to, ha, ha." Of course there's a big difference. Many cancers are curable, FTD is not. FTD is incurable, untreatable and unstoppable. I've had both and neither are fun.

Whether it's memory or not following the conversation, you keep going. A couple of weeks ago I was on a 3 person panel in front of 250 people answering questions at the AFTD Conference. By the time the others answered the questions, I didn't have a clue what the original question was. I just sort of improvised or bullshitized my way through. Not sure if it was apparent or not. Really couldn't care less. Think I had something meaningful to say, even if it had nothing to do with the question. I wasn't trying to deceive anyone, but it's not easy losing your mind. You just get through the best you can and keep trying to survive. Many write to me saying there loved ones just look at them silently or say yes or no when asked a question. The caregiver feels there playing games or being deceptive. No, this is the furthest thing from what's happening. What's happening is the FTD'er is not following your question or the conversation. There not ignoring you or playing a game. They simply aren't' following what your saying. You need to have patience and understanding. 

We are sick and sometimes there's nothing you can do but have kindness and understanding. Family members and friends need to understand and give some leeway to those with FTD or dementia. We just can't stop and say, "I'm not following you" all the time. At a party or with a group of people, I can easily get lost. overstimulated and overwhelmed. With FTD, memory is supposed to be the last thing to go, but from what I hear there are many in my patient support group and out there like me with swiss cheese memories. Not Alzheimers type memory loss, but years that are dropped out. I've realized years ago that I don't remember my children being born or where they were born. I know, because I've been told, but no memories of those years exist. It is what it is, but you just keep on keeping on. The other night I went to shut off my cell phone and I forgot how. Sort of shook my head, smiled and thought, "Well this is a new one."

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

Was talking to my girlfriend the other night and was telling her that I realized that I don't remember working with Dave or being with him at. I remember Dave, Sean and Bill. Remember Bill's wife Gail who was also a  lawyer. I can envision them and remember them perfectly. Just don't have memories. The more I think about periods and people in my life, the more I realize how much of my memory is gone.

Dave told me I sounded great on the phone. Told him that was one of the curses of FTD. Right now I can sit with anyone short term and they wouldn't have any idea I'm sick. usually doesn't take long for a head turning moment though. I receive communications every day from FTD patients and caregivers that are going through hell. Relatives, friends and doctors don't believe there anything wrong with the person sick with FTD. FTD is still a insidious, unknown disease that causes a smorgasbord of symptoms. To live through this revolving door of symptoms is pure hell.

My memories of my 17 year career starting in NY and ending in Seattle are just faces and scattered names. Don't remember many faces, names or events. I remember major accomplishments or have memories of memories, but don't remember the actual events. I moved from NYC 6 months ago and my memories from there are now getting to be far and few between. My memory issues can be a combination of being on up to 17 pills a day for 6+ years, about 100 ECT's (electric shocks) and of course FTD.

To end on something fun,  I wrote in my last blog about one of my docs, Dr. Laurie Mullen who is a good friend of mine and came to visit me to make sure I was doing okay back in NYC. Laurie checked out my refrigerator to see if I had food and then checked out the freezer. In the freezer she found a hardcover book and started laughing. She took the following picture and wouldn't let me remove the book from the freezer. FTD - sometimes you just have to laugh.

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

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated:

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

Saturday, March 29, 2014

Patient Quality of Life

For a few days the eyes of the world were focused on White Plains, NY.

AFTD convened the FTD community for the 2014 AFTD Educational Conference in White Plains, NY. It was filled with the best FTD medical minds in the country, caregivers and those affected with FTD.

Two years ago AFTD decided to break the separation barrier and invite FTD Patients. I was one of 4 that attended that conference in Atlanta. Last year in Utah there were 12 affected with FTD and this year a whopping 36 FTD'ers showed up in NY.  This was the worlds largest congregation of those affected with FTD to date. The phone lines at Guinness records were ringing. I've been lucky enough to meet the same people year after year. We've become friends throughout the year, as well as a barometer to ourselves. A wonderfully realistic and surrealistic exposure of our lives and the shape of things to come. Was also happy to see many of the 90+ from my FTD Patient Support Group come to NY from across the country. It was a show of alliance in support in the fight against FTD and to show the desire that those with FTD want and need there voice heard. Want to be heard that there needs to be a larger coordinated effort in helping FTD'ers get together and that we're not a bunch of crazies that will have a riot. Yes, all of us reach the stage where we can't communicate, but with earlier detection and diagnosis more of us are living longing. Yes, there are those that are 2 years and out, but many are now known to live 10+, 20+ years. Each person has a different degree of awareness and insight. One thing is for sure. We are people sick with a rare brain disease that finds comfort and understanding being around others that sure the same disease and fate. Doesn't matter how different the variants under the umbrella disease known as Frontotemporal Degeneration vary. sd :-) FTD is FTD to those who have it and we see ourselves in each other.

You take the normal person fighting a brain disease and behaving inappropriately, not working, not able to drive and they spend most of there time in bed watching TV or being shuttled to old age centers where there out of place. It's enough to send anyone over the hill. It's a proven fact that FTD'ers in contact with FTD'ers whether online or in person are an immeasurable amount of support. Better for the FTD'er, caregiver and the family. This is the proven ripple affect. I've been running a support group fro 90+ FTD'ers for over two years and this the feedback from FTD'er and caregiver alike. AFTD is  witness to this with the AFTD Director, Sharon Denny being a permanent guest member and the only one in the group without FTD. Members of the FTD Patient Support Group routinely get together. In states like Colorado they meet monthly at an assisted living as well as others. When traveling we constantly reach out to meet one another. Phone calls and little gifts in the mail help. I've met dozens and dozens of FTD'ers in my travels and many have visited me. Yes, this isn't for everyone with FTD, but three's nothing like visiting someone in assisted living who is in there 40's or 50's where the average age is 80+. Many with FTD get placed before there time. This is not a reflection on the caregiver or a societal cause. This is cause and effect by the insidious disease know as FTD. Nothing in the near future will change this, but we can find more comfort for those with FTD everywhere.

36 of 248 attendees at the AFTD conference were those afflicted with the disease. There is a Hebrew word called "Ratzone". It means extreme desire. All 36 had this in common for wanting a better life with happiness and support.

One person from my group suffering from both FTD and AD had Amtrak special services help get her to New York from Delaware. This former genetic researcher made the trip alone. She is pretty far into into progression and showed more guts than anyone I've ever met in my life. Another FTD'er came in with her sons from NJ to pick her up from NY Penn Station and take her to the conference. All to make it to the AFTD conference to learn and contribute. These are my FTD suffererer heroes. 

I'm forever grateful to AFTD for inviting FTD patients as well as having travel grants for those of us who couldn't afford to make the trip.

Every year I host a pre-AFTD Conference Patient/Caregiver dinner the night before the event. This year we had 37 at the dinner. It was at a local Italian restaurant. We took over the restaurant and the dinner lasted 3 hours. Most of us never met each before this dinner and it's amazing how FTD'ers can communicate and blend together. This dinner wouldn't have been possible without Diana Winoker (FTD'er) who made all the arrangements. Diana like me has no caregiver and came in at the last minute and rescued the dinner after I faltered and couldn't organize anything. Diana broke her ankle 3 days before the Conference and still managed to come up from Florida. Cast and all. Diana was also featured in a Alice G. Walton  Forbes  FTD Patient Series. Forbes - Diana Winoker

We also had a breakout session meeting with the 36 FTD'ers that went on for 90 minutes. We all shared and learned. We understood each other and there was a bit of gruff. Big deal, we have FTD, apathy rules and we continue on unfazed and kept on going. No caregivers or outsiders to be shocked or scared away. There is no way to describe how much this meant to the participants. Sharon Denny led the group with my help. I used to lead it, but am sort of taking a back seat. Just not to sure of myself anymore. I will say that one FTD'er that was having language issues had the most amazing step in rescue I've ever seen in my life. Kudos to Sharon Denny for stepping in and gracefully telling the woman's story while comforting and showing friendship to the person.

One bit of humor from our patient breakout session. One FTD'er laughed about his wife finding his papers in the refrigerator. I disclosed last year a doc whose an excellent friend checked out my fridge for food and found a hard covered book in the freezer. Only in FTD World.

Many FTDpers have behavioral issues and don't do well in a mixed caregiver/patient group setting. It's also tough to coordinate because caregivers need there alone time to vent and get away. I had a caregiver who couldn't take it and left. We're still friends 3 years later with her helping me. If I could I would set up FTD Island for all FTD'ers to go to, but I don't play lotto. Maybe in the future as the FTD population grows, a special wing in Assisted Living Facilities for FTD'ers will be set up, but for now local get togethers would be helpful.

AFTD has set up a network of volunteer run caregiver support groups across North America, but it's extremely rare for those afflicted with FTD to get any support. These caregiver meetings should have a room adjacent for the FTD'ers to get together. This would not only free up caregivers from worrying about there loved ones, but there loved one's would be able to communicate with the only people that really understand or relate to them. A nearby pizza place of Assisted Living where an FTD'er is located would also be excellent locations. Of course this isn't for everyone, but many would be helped. The only way for this to happen would leadership from the top. FTD patient quality of life needs to take precedent. I'm hoping AFTD who has is stretched thin, will step up to the plate and heavily promote FTD'er get togehters. I'm always told to have patience. Change is slow. I've no patience, I have FTD. UCSF has support groups for caregivers and FTD'ers and a few progressive leaders have pushed this around the country. We need a big push. I wish I could do more to lead this charge, but I'm maxed out, with my capabilities slipping.

Last year I brought the AFTD "Food for Thought" program to my FTD Patient Support Group. People with FTD want to join the fight and this would help with awareness, raise funds for AFTD. This would also give those with the disease purpose. I was soon contacted by a fellow FTD'er. Probably the calmest and nicest guy afflicted with FTD. Also one of the smartest people on the planet. (for privacy reasons I won't mention his name or former occupation) He was told he could not participate after volunteering because FTD patients aren't welcome. Ripped the wind out of his sails and part of my heart out. I immediately contacted AFTD who told me they had no control over the Independents that run the programs. For those of you doing these programs I'm hoping in the future you will look at this with an open mind and heart. AFTD, though not in control can lead the charge to change.

FTD is a very lonely disease and there are few resources for those with the disease. Most with FTD have never a met a soul with it. Tough to slowly lose your mind alone.

Comments from FTD'ers about the Conference

I can't remember what was said at the conference although I'm sure it was brilliant. The impact of meeting my fellow FTD'ers was remarkably strong for my unemotional self. There seemed to be an instant camaraderie. Things that struck me were that we are a very insightful group for people who are supposed to be unaware. We are very empathetic with each other, though we may not be empathetic with those who don't share our disease. Even though social skills are not our strong suit, we are social among ourselves because we understand each other. I wish we could all live together.

This was a FTD conference, I have FTD, I so wish I could remember the conference itself more clearly but I am only remembering bits and pieces. What I remember the most is the people and there was a sense of like mindedness. The "professionals" interacted with the people with the disease. Outside of the scientific research, I truly believe the humanistic side to understanding is imperative to correct help. I am grateful for the opportunity to join with that kind of interaction. The most impact I came away from the conference was meeting the people I have come to know through Howard Glick's blog and support group. Their faces, stories, laughter and truth, will be forever etched in my mind

The AFTD conference was one of the most wonderful experiences of my life. It was very informative, but more than that, was the bonding experience I came away with. First, and foremost, meeting all my fellow FTD'ers, whom I've come to know and love, through Howard Glick's FTD Patient Support Group, as well as those I met for the first time. The atmosphere was one of love, caring, and understanding. We were all there together, with the same struggle. We could be ourselves, and each one of us knew what the other was feeling. There was no judgment or questioning. It just was.
The AFTD organization is so supportive. I had a few AFTD staff members come up to me, introduce themselves, ask me if I thought the information was helpful, and listened to my story. They had a sincere understanding and hope.
I am very much looking forward to next year's conference in San Diego.

It was great meeting people who were brought together for one cause, FTD. I had a chance to meet fellow patients and folks I only knew from the FTD Support Group. The AFTD national meeting was a life changing event for me. I can't wait to see everyone again!

Caregiver comment

My Mom, sis and I all attended the AFTD's national conference on March 17th in New York. It was an amazing experience for all of us. I highly recommend you loved ones contact ‪Howard Glick and see about trying to join his online support group. you must have a firm FTD diagnosis to get in and no one without one is allowed in. My Mom has found so much support, hope, and acceptance in this group. I honestly don't think she would be dealing with life as well without the support of so many others in her same shoes. The conference is in San Diego next year, in April. The AFTD gives travel grants for caregivers and those with FTD to be able to go.

  Additional Comments

Hello Howard,

Thank you so much for all that you are doing..... It was wonderful to meet you at the conference.... I will always remember seeing you and having the feeling that I was truly going to meet the most impressive "rock star" ever..... You are amazing as you give so much to a community in the midst of confusion, pain and loss.   

I co facilitate a  caregiver support group in suburban Philadelphia and after meeting you and attending the conference, we have decided that we need to seriously talk about a group for those with FTD.. You are a true inspiration.    Again, thanks and God bless you. 


Hi Howard,

As usual, great job on the blog. You write in a way I comprehend. You made a really great point about the need for more face-to-face patient support time. I believe that as well. As challenging as it was to make the journey, try to keep cognitively present, juggle the money...seeing everyone has been the most therapeutic thing that has happened to me since my diagnosis. Meeting and having that immediate connection with everyone you have brought together through your FB group...amazing!
Thank you Howard.
You have inspired me to try to put together people with FTD I my neck of the woods. I have a plan to chat with my doctors, caregiver support groups in the area, and see who would be interested. I just know that there are people who could benefit from such an experience. I don't know where or how well I will be at this challenge, but try I will. At the same time advocating for the AFTD in order to organize more awareness, fundraisers, ect. Either wish me luck or tell me I have lost my mind!

Howard, I want you to know, that I am here, caring about you. Sometimes I wish I were there, just to show you that I will do whatever I can for you as you continue onward, stumbling at times. I'd be there as fast as I can if you ever need someone there who understands.

Howard Glick Observation

This is my 3rd FTD conference around the country and it's just white people that are there. Not one hispanic, african american or asian present. (maybe 1 or 2 in 3 years).  There's a lot of theories why no people of color or minorities are not diagnosed with FTD. I've written about this before and will again. Truth is it's about who has better health insurance and money. PET scans and getting diagnosed with FTD is an expensive, long process. Those that have money and better health insurance get help. We need more awareness now. It's proven the Alzheimer's has a higher rate of diagnosis amongst African Americans than Caucasian. Logic dictates there would be an FTD population and I'm sure there is. Many out there are being misdiagnosed with a mental illness and what time they have left for them and there families is going down the drain.

AFTD is a small wonderful organizations with not much resources. Thank you AFTD for holding this conference, helping with travel grants and giving many with this disease hope of living a better quality of life with FTD. I look forward to AFTD Conference 2015 in San Diego.

Please visit Lorrie Cox's caregiver blog on the conference including slides of all the medical presentations. I've known Lorri for years and is one of the many that tell me I'm just like there husbands.


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