FTD and Death with Dignity

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

Howard

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

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

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

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

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

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

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

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

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

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

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

Howard

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

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251

FTD and Swiss Cheese Memory

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

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

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

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

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

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

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

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

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

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

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

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

Howard

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

Howard Glick

7791 East Osborn Rd. apt. 170E

Scottsdale, AZ 85251