Thursday, March 20, 2014

My day

FTD is a very lonely disease. Day in, day out you don't recognize yourself and are estranged from those around you. No worse feeling in the world than knowing you love your kids, but don't feel comfortable around them. Of course it's not them nor any of there actions. It's you trying to fit into a person that is no longer you.You somehow try to keep the facade of the old you in front, but it fades. I push the envelope in trying to explore my awareness, but I'm growing tired. Went yesterday to check out a neighborhood gym that has a special $10 a month membership. I was given a tour and shown a treadmill that had a TV on it. Guess asking if it showed porn isn't a normal question. Five minutes ago a sip of my Starbucks drink went straight down throat unregulated. Choking or drowning is now a daily occurrence. I don't keep food at home because I eat spoiled food, food left around and even eat it off the floor. I don't like eating out because my behavior around people gets me in trouble, as well as noise and crowds don't do me well. I pick up food and take it home, but now I'm concerned about choking to death at home. That's fine, have to die somewhere. 

My days are still 7/7. Seven days at Starbucks around 7am. A few hours there and the rest of the day is gravy. Besides speaking to some Sbux buddies my days and nights are alone. Just checked out a woman's butt here at Sbux. Don't even care if it's noticed anymore and really don't give a shit about explaining FTD, awareness cards or anything else when issues occur. Almost got into a fight and the person stopped in the middle and said to me, "your handicapped" and left. Sometimes have happy hour $3 chicken wings at night, but have started swallowing hole bites or choking. I've a girlfriend I see weekly and we have short spectacular times together.

People have brought up Assisted Living.  That will never happen. I'm a social guy who can't be around people. I've met dozens of FTD'ers. Have seen all variants and stages. Have visited FTD'er friends in assisted living and know many there. Nothing like being somewhere and not being able to hide from who you are. I'll pass.

Have been told I might qualify for a scholarship. Spoke to my ex-wife about me now making my funeral arrangements. Have decided on a Jewish burial and Yaffa told me I should qualify for scholarship funeral. That would be nice because if I spend my money now on funeral arrangements and run out of money, then I'll have to eat string beans, choke and be gone. Won't do assisted living or the streets. Has nothing to do with me being Jewish, living in Israel or having fought in the Israeli army. A few months ago I asked my daughter if she wanted daddy/daughter tattoos done. She had a small one on the back of her neck in Hebrew with one of my "quotes."She was very excited about daddy/daughter tattoos. I fought her bone and dog over that tattoo a couple of years ago. I've none on my body and would of never considered one 99.9% of my life. Spoke to Chelsea a few days before the AFTD conference and asked she decided on a tattoo for us. She told me we shouldn't have tattoos done. My son Myles is a religious Jew and in order to be buried in a Jewish cemetery, you need to be tattoo free. This is the least I can do for my son.

Life isn't easy, but no one gave me a happy pass at birth.

Howard

* 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

6 comments:

  1. Howard, I hate to hear of your new struggles with swallowing. I truly wish I lived closer so I could be of some assitance to you, not an intruder in your life, but just a little Fairy GodMother who could drop off meals and clean out the fridge weekly or something like that. You are an amazing man, such an example of strength and perserverance for anyone who reads your blog or meets you. I'm learning that it is a trait of FTD I think? After meeting so many at the conference plagued by this disease, I found you all are so so strong and have a will to persevere that I'm not sure I would have. Hang in there Howard. You are doing the very best you can, you are loved by so many, and you are doing such great work for the disease and all those touched by it! Sending big hugs your way, Heather Miller

    ReplyDelete
    Replies
    1. Heather,
      Very sweet of you, but I'm happy your Fairy GodMother and outstanding daughter to your mom.
      Howard

      Delete
  2. Howard,
    I find it amazing that you are still able to articulate your thoughts despite your challenges. I get the sense that your pre-FTD life required intelligence and thoughtfulness. How sad that your affliction took so long to be diagnosed.
    It sounds like you have a great relationship with your kids. Your strength and tenacity is to be admired.

    ReplyDelete
    Replies
    1. Hey Life in General,
      Thank you very much for the warn words. They are deeply appreciated.
      Howard

      Delete
  3. Hi Howard,
    Your problem is called dysphagia. There are dietary recommendations to minimize your risk of choking. You would most likely be at a level 4, which is the least restrictive. Check out this link for dietary recommendations.
    http://gicare.com/diets/dysphagia-diet/

    ReplyDelete
    Replies
    1. Hi Susie,
      Thank you so much. Not taking all this to well.
      Howard

      Delete

Note: Only a member of this blog may post a comment.