Monday, October 15, 2012

The Titanic

It's been 2 and a half weeks since I stopped taking Namenda. I sort of feel normal now and have been relieved of the extreme tiredness that I could never get accustomed to. Yes, I'm tired after my few hours at McBucks. It's an FTD occupational habit. But those ridiculous waves of tiredness are gone. There are absolutely no other differences that I feel or others can see.

Had the one of the Starbucks employees pull me aside for a bit of a talk. Told me an anonymous person called in a complaint about me and that I needed to be concerned about getting banned from Starbucks. We're in NYC and my behavioral issues are nothing compared to the junkies in the bathrooms and some others that are cursing out customers, punching, yelling etc. I wrote to the District Manager of Starbucks because I think it was a bunch of crap and harassment. He wrote me back immediately apologizing and told me he is going to find out what's going on. I'll update this situation soon with more details.

Feel like I'm on the Titanic after it hit the iceberg. Passengers were starting to get concerned only after they started passing out life preservers. I feel just as unprepared for what I'm facing. I met with the director of Memory Club this week and we spoke about Long Term Care and my other "end of life" plans. She offered to help me with these because it seems no matter what I try, nothing gets done. The only thing I really care about is putting a will together. I have a truly disgusting criminal in the family that will attempt to steal everything if it's not clearly laid out.  The director of Memory said she is going to set up a tour of "Memory Facility" where they are used to dealing with those with Dementia's. Only problem is there used to Alzheimer's and not active FTD. I know someone here in one of those with FTD. He's in his fifties and just paces around stoned out on meds. Most everyone else there is 20-30 years older. I can only hope my heart goes out before I reach that point. Sorry, but I don't believe in living just for livings sake. There is a certain quality of life we all want in good health and in bad health. Luckily I have enough health issues where something should resolve itself.

As much as I try and keep this blog upbeat, it is more important to keep honest to myself and the people that are reading it. I would love to write how much I have to look forward to, but right now there isn't much. I still haven't even figured out how I'm going to see my kids this winter break.

One good friend said to me the other day how I have no life, except everything that's wrapped up in my work in FTD world. Yes, I agreed with her. I also explained that my finances are being cut severely and where I want for absolutely nothing, I do absolutely nothing except get coffee from Starbucks because I can't afford to do anything. I also can't figure out what I have and what I can spend so I spend nothing except for basics. Much of this is choices as well. I cut back in many areas for the month so I could send my daughter a birthday present. We all have choices in life. I choose to stay in Manhattan where it's more expensive so I pay the price. It would've been nice if all the social services weren't cut around me, but that's life. I'm not sure how many more rises in expenses and cutbacks I can take. I'm hoping not to be forced out.

I've been filming more lately and I feel good about that. I hope one day "Howard's Brain" will be made and people will understand the ugly world of FTD.



  1. Thanks for another great blog, Howard! I hope you don't get chucked out of Starbucks. We should all arrange a boycott of Starbucks if that happens!

    1. Thanks Alis,

      If I get kicked out of Starbucks, thee will always be somewhere else to go.


  2. Howard, thanks for a great post, as usual. Keep on being you! Good tat you stood up for yourself with Starbucks. You'r eone of their best customers, they shouldn't diss you like that.

    I am glad that there is someone you can talk to about future plans. Most care places don't ave much experience of FTD in my experience. You probably have access to educational stuff, but in case you need something - the clinic where my Mum goes has a toolkit:

    Thinking of you - and you do have a life. I know it's not whaqt you had, but you are still out and about, doing your thing.

    God bless you!

    Jenny, Australia

    1. Hi Jenny,

      Researching long term care here in NYC will be interesting.

      Thanks for the kit,

  3. Howard,
    Excellent post.... great you are getting out and living your life.
    How great to have the director from memory care to help you. Happy.
    I will go back and read the purpose of Namenda again, you seem to be doing fine without it.
    Stay strong! :O)


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