Monday, August 27, 2012

FTD'ed and Exhausted, so What.

Someone whom I'm in contact with wrote to me last night that she noticed my work week starts on a Monday and ends on a Monday. I've been working 7 days a week. This is what I do. I don't even realize it. Being medically retired means the normal work week doesn't flow from Monday to Friday. It just flows with no beginning or end.

It is by no means your normal schedule. My neurologist has had me taking 10mg of Melatonin to try and help with sleep and it's been working. I'm now up to about 5-6 hours a night. Still, I can't shake the on and off exhaustion during the day. I arrive at Starbucks between 6-7am and return home by 10-11am. Things aren't easy as they used to be. A year ago I used to be running outside, filming "Howard's Brain", and would be working on multiple tasks easily switching back and forth. Now I need to totally focus on one thing at a time and that's even difficult.

My main areas of focus now are my Blog, Book and FTD Patient Support group. I'm trying desperately to stay on top of these and not let them drift. It just seems like I'm having such issues staying focused and just have waves of exhaustion hit me. I'm usually exhausted and it feels like my brain has shut down from late morning till mid/late afternoon. Then I catch a 2nd wind for a few hours.

One theory is that since there's substantial atrophy in part of the brain, the healthy part needs to work aggressively to make up for the damaged part. This mean using 10-20 times the amount of energy and time to get through easy reading and functioning. 

Some use medications to help push them and keep them going.  I've had to many issues with side effects and really don't like or trust what we call modern medicines. I've been incredibly successful with behavioral techniques in helping manage some of the symptoms of FTD. I prefer not to dull my senses and brain. I've also been very fortunate and lucky as to how FTD has been affecting me. Each case of FTD is different and there's no crystal ball on what will happen to each individual. 

Reading and comprehension continues to become more difficult. Seems by the time I get to the 2nd or 3rd paragraph, I lose the beginning. Sometimes I already know the statistic of an upcoming page or paragraph and realize I've read the same newspaper article over and over perhaps a half a dozen times. When it comes to TV, I can only follow the simplest of plots. Any movie that has subplots or complicated topics I lose track of. When I realize I don't know what's going on, I usually shift back and forth to my computer.

Writing is a different story. I can write freely, but it becomes an arduous task to edit or review my own writing.

One routine change I will be making this week will be adding going to the gym a couple of times a week. I'm not sure how this will affect me, but I'll find out. I'm also going to cut my Melatonin intake by half from 10mg to 5mg. Hit or miss, we'll see what happens. I would love an extra hour or two a day of functionablilty.

A friend has volunteered to help me get back back on track filming "Howard's Brain" a couple of hours a week. I need the help. It's become so difficult trying to keep everything going and keep up on my projects.

As far as I'm concerned, I'm doing great and will keep plugging away at life. We all have obstacles in life and just need to keep finding ways to circumvent. I might be getting less done than last year and have less money, but my quality of life continues to improve. What is important to us in our lives? I had to go to hell and back to find out. What I used to think was important and substantial now seems silly. Does this mean I'm being critical or judgmental of anyone else's life. Absolutely not. I just found my own path that works for me. I've accepted what my life is and will continue to make the best of it every moment of every day, every day of each week, every week of each month and each month of every year. 



  1. At least you are trying to help yourself. I believe fully in self-help. You are very empowered Howard. Keep it up!

  2. Thanks for the blog, Howard!

    So many of the things you describe are the same as what my husband experiences. He has found great comfort in reading your blog, and so have I.

    Keep at it, Howard - what you are doing is important to all people living with FTD.

    :-) xxx xxx

    1. Thanks,

      Sometimes I feel so alone and these comments keep me going.


  3. Great post Howard. I appreciate your thoughts SO MUCH.


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