Tuesday, January 17, 2012

FTD - Hygiene and Loss



Sometimes it’s so difficult writing knowing I might be alienating the few people around me that can tolerate and love me. I think as I write how the people in my life dwindle, but the truth of FTD must come out no matter what the cost.  A couple of months ago I wrote about a professor I used to speak to daily at Starbucks. He is close with someone whose wife has FTD. I used to openly talk about FTD and my symptoms.  He talked about how her symptoms were similar to mine and how she cascaded into a rapid decline. He had no idea how much that effected me. This was a man who I liked and respected. I wrote about the incident without using his name or describing him. I haven't seen him in months and feel terrible about it. 

It’s a terrible feeling slowly losing your mind and actually knowing your life is slowly slipping away. I don’t feel it slipping away moment by moment or day by day. I still am grasping for a life that no  longer exists. It's hard to keep putting up with continual loss.  I try to be productive each day, but things keep falling through the cracks. 
One of the cruel things of FTD is it is deceptive to the one that has it and those loved ones around you. One of the symptoms of FTD is failing hygiene. Me, I’ve always taken at least 2 showers a day since I was in the Israeli Army 25+ years ago. My hygiene has always been impeccable. I've never worried about it, that is till now.

A close friend of mine told me she noticed I haven’t changed my jeans in weeks. I immediately answered that I have a few pairs of the same Levis which is true, but I was covering up. There it was, I was busted. Yes, I do my wash every Saturday but I’ve been wearing the same jeans for a while now. Washing them on Saturday’s but I’ve noticed that I’ve been washing just one pair of jeans for a while now. I just never thought twice about it, till now. 
I normally bush and floss my teeth twice a day. I’ve done that forever. Now I’ve come to the realization that I’ve been flossing and brushing once a day, sometimes two but mostly one.
Well it’s another battle to fight. Of course I’ll get right on top of this. I’m glad I know what’s going on so I can institute change. It’s not always going to be this way. Sooner or later I won’t realize or care what’s going on. 
I don’t know if anyone realizes how difficult it is to fight an unseen, unknown enemy that happens to be taking over your mind. FTD is slowly driving you crazy and killing you while destroying your whole life and turning your friends and relatives lives into a living hell.  I’m in a constant losing battle. FTD is an unstoppable, untreatable, incurable disease. There are drugs that will numb me to being touch with myself and probably make my behavior and my life easier, but I choose to fight like hell every day and to cling onto a life that is going away,
Sooner or later very little will matter to me, but be more difficult for the people around me. 
Right now the important thing is to put on a fresh pair of pants every day and brush & floss twice a day. It’s has to be regimented or I’ll fall of the mark again.
Such is the day to day battle with FTD. Next............

8 comments:

  1. Howard, my HB is also dealing with the same hygiene issues. I try not to make a big deal of it, unless there is body odor, or the clothes are dirty looking.

    I figure, in some cultures once a week shower and wearing clothes till they wear out is just part of it. I do remind him to brush his teeth, but....

    I feel your heart ache and know you are doing great work being the voice for so many who have long ago lost their voice.

    http://www.caringbridge.org/visit/johnjaycox

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    Replies
    1. I feel for you and your husband. I'm there with with your husband. It's not easy and not going to get easier. Hang in there, your doing great.

      Thanks as always for the well wishes.

      All my best,
      Howard

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  2. I am new to your blog and I haven't read your previous posts but I will. I find this interesting as you are writing about this illness while you have it ongoing. My mom was diagnosed with FTD and I have often wondered when it began.

    Thank you for your honesty and openness to this...take care.

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    Replies
    1. Thank you Ellen,

      I'm sorry about your mom. Hang in there. There is also the FTD Support Forum which is an online Support forum for mostly caregivers. For resources there is my blog, AFTD - The Association for Frontotemporal Degeneration which is the best resource in the world and the UCSF FTD site. you will find links to both these sites at the top right of this page.

      My friends just tracked back my symptoms and FTD started manifesting 9 years ago.

      All my best,

      Howard

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  3. Hi Howard,
    I loved reading this piece! Well written!


    Merlen Hogg
    pinner

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    Replies
    1. Hi Merlen,
      Thank you very much.
      Howard

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  4. Hello Howard,
    Usually I do not read article on blogs, but I would like to say that this write-up very pressured me to check out and do it! Your writing taste has been surprised me. Thank you, quite nice article.


    Andres
    Body by vi

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    Replies
    1. Hi Andres,
      Just want to say thank your comment. It cheered it me and is deeply appreciated.
      Howard

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