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.
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







20 comments:

  1. Just letting you know people do read your blog. Mom was diagnosis ed last year, and though I can only relate to how it affects the caregiver side, reading your words help to see it from her perspective. Hang in there.you are helping others and bringing awareness to others. Thank you

    ReplyDelete
    Replies
    1. Thank you Wendy. All the best to you and your mom.

      Howard

      Delete
  2. I always read your blog, Howard. It gives me some insight into how my husband must be feeling. He doesn't speak much, or write much, and if I ask he can't answer. Hang in there, old son. xxx

    ReplyDelete
    Replies
    1. Thank you A.
      Glad my blog helps with your husband. You hang in there to.
      Howard

      Delete
  3. Hey Howard wish I could offer something more positive than just "thinking of you" ... but FTD simply SUCKS. Sorry we have to be here but hey it really does beat the alternative at this point. Just keep hoping and praying for some genius to find a way to stop this nightmare we find our selves in.... Keep on keepin on....

    ReplyDelete
    Replies
    1. Hi Joy,
      Appreciate the positive thoughts. Unfortunately no way out of this quagmire except death. Not looking forward to dying , but I won't be the first one on the planet to do it either :-)
      Howard

      Delete
  4. Sounds like you need a reminder as to why you write. You write to increase awareness, and because every time you get up and go to Starbucks, you just beat FTD for another day. You're my crazy optimistic friend and don't ever lose that.

    Oh, and don't choke. Take small bites, chew well, and don't do anything else while you eat, not even reading or watching TV.

    ReplyDelete
    Replies
    1. Thanks Karen,
      5:21am. Guess I'll be getting up and heading to Starbucks soon.
      Maybe I could be the first to choke to data on Gefilte Fish. No one dies of FTD, just what FTD causes. Howard Glick RIP Cause of Death: Gefilte Fish :-)
      Howard

      Delete
  5. Howard, I am so sorry you feel so down. You are an inspiration to everyone. Diane

    ReplyDelete
  6. Howard, how are you doing today? Your post made me very worried about you. After watching what my husband went through, i cannot imagine how it must feel when you are still able to be so articulate and aware. As the last person wrote, you are an inspiration to others.
    I hope you are getting the help you so need and deserve. You are right in your last statement - "No-one dies of FTD, just what FTD causes". It is truly a heinous disease and I hope that one day a cure, or at the very least, treatment will be found.
    Hang in there buddy.....

    ReplyDelete
    Replies
    1. Hi Debra,
      How am I doing today? Just another day in the neighborhood. Yesterday, after messing up US Air Ticket, told the agent 4Q, I was glad US Airways was going out of business, hoped she lost her pension and went homeless. Then waited at the Scottsdale library an hour for a free zoo pass for my son and I. Caused a bit of a scene outside with the librarian. Then when I got in I got the only zoo pass to find out I didn't count the days right so the zoo pass would expire before I could use it. Then I almost lost it not figuring out how to use there checkout. Left everything behind before I lost it and went home. Just a normal day in the life of an FTD'er. Never mind the medical crap which is starting to pile up. I'm at Starbucks now so the day as usual is starting great…..Where it will wind up? Probably FTD land.

      Delete
  7. flufferfoot. I like that Howard.

    ReplyDelete
  8. Hi Howard, how are you doing? I miss your posts.

    ReplyDelete
    Replies
    1. Hi Stimpy,
      Not easy. Hoping to blog in the next couple of weeks. Thanks for the reach out.
      Howard

      Delete
  9. Hello, Howard,

    I've been reading you from a distance for some time. Sorry for what has been a bad passage for you, last couple months. I'd echo Karen, though-- you need to keep writing: to increase awareness, as she says; to force your world to slow down and behave a little better; and to keep us together with you. Writing has been what keeps you in shape, such as it is -- and you know that better than any other person I know.
    You're doing some heavy lifting, my friend. My dad was diagnosed twelve years ago, at age 80....I thank you for him.

    and stay away from the Gefilte fish...life's way too short for that. stick with the smoked white.

    ReplyDelete
    Replies
    1. Hi Erma,
      Thanks for the butt kicking. Need it.
      Will go with the smoked white. Probably on sale now. Passover passed over me this year.
      Howard

      Delete
  10. Bad luck for all if you are scattered.

    ReplyDelete
  11. My grandma has had dementia for two years now. She has been loosing more and more of her memories and needs a place to for dementia care. Do you know of any good places in the area? I would like it to be close so I can go visit her.

    Brad | dementia care

    ReplyDelete
  12. I find your blog very helpful. I am the legal guardian of my 70 yr old dad diagnosed 3 yrs ago bvFTD. You haven't posted in awhile and I am praying you are ok. Just know I'm praying for you and look forward to reading a update soon

    ReplyDelete
  13. Living with FTD would be a really hard thing to do. Luckily there is so much love support out there for you. It is really helpful to be able to read and learn more about what it is like. It really helps me to understand this diagnosis so much better. I really appreciate you sharing your story.

    Eliza Lawrence | http://www.seniorshomealone.com/#!dementia-and-alzheimers-care/c13jp

    ReplyDelete