Tuesday, March 13, 2012

FTD - Cognitive Skill Decline and "Howard's Brain" update

click link to see trailer and donate!

I want to thank all of of those who've donated  to "Howard's Brain". As I've said, This film might be starring me, but it's really about all the patients, families, caregivers and lives that have been devastated by FTD.

We've 15 days left for taking donations.  We've reached over 50% of our goal on the way to $20,000.

Special Thanks to AFTD for there generous donation.

Please donate to "Howard's Brain" and get us closer to the eradication of FTD.

*$50 donation receives "special thanks" in the films credits.

Project Update #3: Half Full

Joe Becker
Posted by thinkfilmLike
I have scotch glass with the words "Optimista or Pessimista" inscribed above and below a line that marks the shot level.  Depending how I pour that day may say something about my mood.
It's a perspective thing, isn't it: Do I see the glass as half empty or half full?  Well, this past week, our Kickstarter campaign was all about that perspective.  Actually, let me re-phrase that: Last Thursday, you -- all of you very generous people-- pushed us past the half-way mark to our goal funding Howard's Brain.  Thursday night, I raised my glass to all you optimists out there.
It's quite an achievement for only 12 days and I just wanted to take a moment to say thank you to everyone who's contributed to and believed in Howard's Brain so far.
I've never told him this but I think Howard is an optimist by nature -- but a fragile one.  Of course, Howard's dealing with a lot these day so he's entitled to a bit of nerves.  Personally, I'm comfortable living on the margin and I think I do some of my best work when the odds are running against me.
All that said, I'm really looking forward to this next phase of our Kickstarter campaign.  As I said, we're half-way to our goal and there is no turning back.  I'm looking forward to the next week and what insight my scotch glass will reveal.
Thank you all so very much.  Our glass is overflowing.

    Hey Joe,

    Nice Update. Guess your watching the footage and reading my emails. I have to admit you nailed it on the head with the "fragile optimist" remark. Most of my life I've been an optimist by nature and like you I thrive when my backs up against a wall. 

    I've taken a few hits the last 8 years. On one hand I'm extremely satisfied at my accomplishments since I was diagnosed with FTD. On the other, things are getting tougher and the hits just keep on coming. My cognitive skills are declining. Basic computer skills and life skills seem to be getting tougher. I constantly need to relearn how to do things and need to reread the most basic documents. I've had incredible difficulties just posting and mailing. Basics. I wanted also to send out a short targeting letter today and couldn't write. This after redoing my mailing list database which also took days instead of hours.

    My girlfriend was shocked last week that I no longer knew the basic cut and paste command. This after a technology career and having taught photoshop and pagemaker.

    My doctor called to make an appointment earlier this week and I forgot where on my iPhone I put appts. Took me about 20 minutes to find it by pushing every app and then when I found it I had to figure out how to set the alert. When I went to my appointment,  my doctor Laurie Mullen came out to greet me. She told me I was exactly on time, except 2 days early.

    I received a post from this guy who is taking care of his mother who has FTD. He wanted to play "devils advocate" with me as to why I function with FTD and no one else can. He also doesn't like my attitude :) He apologized after a few correspondences. I explained how I'm functioning and what I do. I also think I'm still at an early stage or early middle stage. I consider myself extremely lucky to where and how fast FTD is progressing. Hard to gage because there are plenty in my FTD Patient Support group that are functioning like me with the same "Never give up" attitude as me.

    I'm so proud of the members of the FTD patient support group. 30+ people who don't whine and complain, but rather discuss nutrition, attitude and help support  each other to continue a productive life for as long as they can. I'm truly honored not only to be the founder of the group, but to be a member of it. A large portion of the film is dedicated to making those choices to live, not taking the easy road of giving up and letting life slip away. 

    I really don't have any complaints. I am working harder now than I can ever remember and I'm fine with that.  It just takes so much to get through each day and I find I resent wasting any time these days. Morning is my Prime Time hours and I hate wasting a minute. I find myself resentful of wasting and time and appreciate what I have and how much I'm accomplishing.

    I've a lot to be happy about. I've a lot on my plate, but so what. That's the main reason I'm functioning so well.



    1. Keep up with your optimistic attitude Howard. When I read what you write it makes me wish my mom had as much insight of something being wrong and to have kept trying to find out what it was. She just was in denial and was supported by her Dr.s and of what she choose to share with them. She always was "I'm fine".

      1. Hi Ellen,

        Thank you for your nice comment about my attitude. FTD is such a strange, insidious disease it effects each person differently. At times I'm unaware and feel there's nothing wrong with my actions even though a whole room full of people might be looking at me with there mouths wide open. A part of it might of been denial by your mom, but I'm sure she was also in that place of not being aware what's really happening. I fight it every day. Sometimes winning and sometimes losing.

    2. Howard, you are the most generous person I know. You give of yourself, which is by any measure, the ultimate in generousity. And Yes, You've always been and continue to be an optimist. You have also always been a fighter (I had a Black Eye at twelve to prove it!) and you continue to be a fighter... That's you buddy, The Optimistic Fighter, The Smiling Soldier... I know you will continue to fight and remain in light.


    Note: Only a member of this blog may post a comment.