Friday, March 1, 2013

FTD and Brain Donation

Received my GLWD - God's Love We Deliver for the week on Wednesday. I switched to Vegetarian to try to be a bit healthy. My delivery came and they brought 7 meals of Mac n Cheese for the week. I don't even like mac n cheese. To bad they forgot the cyanide milkshake. 

Needless to say, I went out hungry to get a sandwich at the local supermarket. I ordered an unhealthy sandwich. As they were making it I had a change of heart and walked out. They were busy so maybe they won't remember me. I then went to the other supermarket and bought a box of Mallomars and Vanilla Wafers. Yep, finished both. 

Next day I made a box of pasta and threw on cream cheese and butter. Yep, finished the whole thing. So now I'm sitting here in walrus mode feeling like a beached whale.

This does have a happy ending. Called up GLWD a few minutes ago and there modifying my diet. Fish, chicken and vegetarian. No meat or pork. I tell ya, no matter how much I try it's hard dealing with all this shit alone.

Went to my neurologist at Columbia University Medical Center. I love Dr. Karen Bell, she's wonderful. In fact, I like all my docs. If I don't like them and aren't happy with them, I fire there asses. Can't understand people that complain about there docs being incompetent or them not liking them. When your sick, docs are the most important people in your lives. It's simple, you don't like them, fire them. I spent a lot of time meeting and interviewing docs. Yes, they go through job interviews with this oddball FTD'er. When I found the ones I liked, I cross referenced there insurances. Found out which one they took and switched my insurance. Now I've got the best docs I could find. Competent and I like them. So now that I'm all set with medical help, I'm probably moving to Tampa. Shit happens.

Spoke to Dr. Bell about my lip tremor and losing words. Nothing can be done at this point. If it gets real bad in the future, then it can be addressed. I'm glad. I'm a drug free FTD'er and I want to stay that way for as long as possible. Dr. Bell, whose opinion I value wasn't to happy about me moving and leaving my friends and support. 

While at Columbia, I completed all the paperwork for brain donation. Told them they could take out whats not being used now with an ice cream scooper. They declined and deferred to autopsy after death. To bad, I was hoping to lose a bit of weight with some unused dead brain cells removed. I just can't catch a break. Good thing is if I move to Tampa, they'll take care of slicing, dicing and shipping. Columbia is a great.

Next Thursday it's onto Tampa. Never been there before. My friend Diana is going to help me out and show me the town. Have to move somewhere. It's warm and has a bay/beach. Not a bad place to medically retire. 

What do I want in life? Time and a companion. Seems like FTD is progressing slowly enough to give me time to get substantial work done. A companion, not a caregiver to help me and put up with my oddball, strange FTD behavior. Hopefully I won't wind up all alone in Tampa.

I can only control so much and I'm aware that I'm unaware of much that happens. That being said, I do much better in public and around when I'm with someone and not alone. 

Haven't been happy in a while. Maybe I'll find some happiness in Tampa.

Howard

6 comments:

  1. Hi Howard, Good update, enjoyed the read. Now you are doing some good thinking instead of that stinkin' thinkin' that comes along much of the time. If you decide to stay in Tzmpz, there will be many "companions", and lots of ways to meet them. You know that I live in St. Petersburg. I met my husband online 9 and 1/2 years ago and we have been married 8 and 1/2 hafe years. There are many activities, clubs, churches and the like in Tampa for great fun. You will love the area, but one day you may move over that big I-275 bridge to the real beaches. Clearwater is especially beautiful! Hey, stay sane and healthy for your trip next week. Really enjoyed the information and you're quirky attitude about it all. lol, later, Darla

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    1. Hi Darla,
      Am looking at St. Pete as well.
      H

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  2. Hi Howard,

    My husband just got an FTD diagnosis -- 56 years old -- we are devastated, of course. Reading your blog has kept me going as it is proof that one can indeed live with dementia. I really respect the resilience and strength (and sense of humor) that you show.

    I wish you much happiness in your move to Florida. I was born in the Bronx and now live in New England, but I am a New Yorker at heart -- sort of sad to know you are leaving such a great place, but the best to you. I am sure you will do great.

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    1. Hi A,
      Both my parents were born in the Bronx. My father used to walk to Yankee stadium and watch the Yankees.

      Understand how you feel. Please email me at howardjglick@gmail.com I'll send you info on support etc. Your husband is welcome to join my FTD Patient Support Group. This is a private, closed group of patients. There are over 50 in the group from 9+ countries. I'll send you my phone if you'd like to talk.
      Your both not alone.
      All the best,
      Howard

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  3. Howard, Finally have found some time to read your blog. Hey, craving sweets and carbs part of the disease also. I wish you the best on your move. It will work out well and you will find that special someone. Can't wait to hear more of your life adventures. Stay strong my friend! Peace:O)

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    1. Hi A,
      Thank you so much. I try to keep sweets out of the house. Heading to the dentist now. Fun adventure :-)
      Howard

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