Monday, October 29, 2012

FTD and Hurricane Sandy

Last night a friend was visiting and warned that Hurricane Sandy might whip though my window and into my apartment. She asked what I would do. I told her if it did I'd open the front door and let it out.

Me and Sandy this morning

 Management and Prognosis  *AFTD*

Although specific symptoms may vary from patient to patient, FTD is marked by an inevitable progressive deterioration in functioning. The length of progression varies, from 2 to over 20 years with a mean course of 8 years from the onset of symptoms. FTD itself is not life-threatening. It does, however, predispose patients to serious complications such as pneumonia, infection, or injury from a fall. The most common cause of death is pneumonia.

I'll take 20+ years. Right now I've had FTD for about 8 or 9 years and though I'm rough around the edges, I'm planning on going for the record. I'm not going anywhere.

There is so much misinformation and outdated information on FTD. Brain imaging is an advancing science and we're getting earlier detection all the time. Many more people who were diagnosed with mental illness are now finding out they have FTD earlier. It took me 6 years of misdiagnosis to get a properly diagnosed with bvFTD. I can't tell you how many people I receive letters from that are told from there doctors they have 2-4 years left to live. The stress this puts on is unimaginable. Yes, there are many people that die quickly, but there are many that live many years and they should not have the death whammy put on them. 

When I was first diagnosed in June 2010 and told to make my "end of life" plans, I scoured the internet and everything talked about imminent death. 2-10 average 5 years till death. In 2011 that was changed to 2-10 with people living up to 17 years. Now it's 2 to over 20 years with an average of 8 years. The best things that happened to me after being diagnosed was my favorite neurologist, Dr. Blatt banning me from reading about FTD on the internet. It's was so depressing. People with any severe illness need to find a way to go on and make the most of there lives. You need to put your focus and energy on living and not dying. You put it on dying and not only will you be miserable and depressed,  you'll go faster. Sometimes you just got to fight to live.

Had some sheer panic this week. My ex-partner and angel in my corner wrote to me on Friday that she was laid off and could no longer help me financially. We split up about two and a half years ago and she's been helping me each month. She has been absolutely wonderful. I knew this day would come sooner or later, but now it was here... My lease is up in my apartment in January and I'm thinking I have to move. Where? I can't afford NYC. Arizona maybe. Where can I go that I will fit in and not get in trouble fast. The people and stores here in my NY neighborhood know and tolerate me.  I'm totally panicking. A close friend of mine told me I need to put a team together of my friends. Then Sharon Denny from AFTD called and suggested the same thing and she could arrange a conference call with my friends on the team and we could strategize. 

Sheer panic. Thoughts of life really being over. No place to go and thought of being forcibly placed in a nursing home or institution cloud my mind as well as suicidal thoughts. Of course I wouldn't do that, but it enters my mind. As my friend David told me, "Howard, your good at a lot of things, but you failed miserably at your suicide attempt so don't bother trying it again. Your suck at it." The next day it got back to me through my power of attorney and friend Marc that he had a reserve for me, so I'm okay for a while. Of course I knew that, but forgot or was just totally overwhelmed by panic and stress. Now it's a day later and I've had a couple of outbursts and have still not settled down. One little outburst had me throw a 24x36 out my window last night. It went down about 15 stories. Don't worry, nothing down there but a fenced in wooded lot. Might've killed a rat. 

I left a restaurant with a friend and when we got outside she slapped me in the face. It wasn't a hard slap, but it was harder than a playful slap. She told me it was because of what I said to the waiter. As we were leaving the waiter asked if we were worried about the Hurricane Sandy. I told him it would be great. Lightning, thunder, wind, trees snapping and the building shaking. Perfect atmosphere and we'd be riding it out having great sex. He laughed and my lady friend obviously wasn't amused. I understand  she was a bit upset about it and obviously right. Still, till this moment sitting here and blogging I still don't get what the big deal was. Did I really say something wrong.

Okay, lets do a poll. Leave me a message below or somewhere else whether you think Howard was inappropriate or not?

Ah, the wonderful world of FTD

Sandy is here and I hope your all keeping safe out there. I might go out streaking later.



  1. I thought your comment was great! You have a wonderful sense of humor! Good luck with Sandy for sure. We're in Southern Ontario, so won't get the full effect, as you will.
    A fellow FTD'er

  2. Thanks Mary. Hugs back at you.

  3. I thought your comment was funny but then I am not "normal" either. My wife was not so happy with a few comments I made this last weekend with friends either but oh well, filter just doesn't work like it used to work. :-)

  4. Why are you hanging out with someone who thinks its ok to hit you? If she had a problem with what you said, she could 'use her words' like they say in kindergarden. Howard, a lot of times it seems like you tolerate bad behaviour from others, and agonize about what you may be doing wrong. Not everything is your fault, and you are not the only one with issues.

    1. Hey Les,
      It didn't hurt. It was more playful with a little serious tint to it as to get my attention. I know some others are jerks like sandwich boy and the Starbucks arrogant ass.

  5. We-ell - I wouldn't have slapped you (!) but I probably would have been cringing a bit as I smiled awkwardly!! :-P

    My partner has done that kind of thing to me a few times - bless him! I always point out that I would rather he didn't - but I don't labour it, as he can't help it, and doesn't like being 'that guy'. He was always rather shy and reserved before FTD - loud and leery people made him cringe too - so it's very clear to me when the disease is speaking. :-)

    People who love you will just look past your little foibles - whether they are FTD induced or just part of your normal character. :-)

    Watch out for that hurricane, Howard!

    1. Thanks Alis,
      I think i conveyed it wrong. It wasn't a shocking slap. Just a get your attention slap. Didn't hurt at all, either physically or mentally. She was smiling when she did it.. It was about me and what I said to the waiter.

      Hurricane is whipping outside.


  6. i would have laughed and made a comment back, if someone had said it to me :)simone x


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