Tuesday, November 13, 2012

FTD and Heaven on Earth

Well, just finished educating someone to FTD, so my evangelistic advocacy campaign to educate goes on. It's an idiosymplamtic part of my existence to educate till everyone on Earth knows that FTD is Frontotemporal Degeneration and not a flower delivery service. Time is standing still for me, so I have all the time in the world.  It would be so easy just to sit in my apartment all day and do absolutely nothing. FTD just keeps dragging you to a unmotivated, secluded place. Each morning I set off on a new plan to escape my brain inflicted isolation. 

I'm still smiling while over at an incident a few of weeks ago at Columbia. I was there for a Stress Echocardiogram. The test took about 45 minutes. Of course I jabbered on about FTD. On the way out I passed the doc and assistants and waved. One waved and said they were watching the 'Howard's Brain" film trailer. I stuck my head in and noticed one computer with my blog on it and the running the trailer. Bonus, medical personal getting educated. *** Just realized that I never called to get the results of all my heart tests. Ooops, well I guess my hearts still beating.

Everyone once in a while something happens that reminds me that there is heaven on earth. I've been struggling for months to try and find a way to see my kids for winter break. Trying to organize anything has had me so confused and stressed lately. Yesterday I received an email that a person who I've never met or spoken to before arranged 2 tickets for both my children to come visit me in NYC from Seattle. This was an amazing show of generosity by someone who has a family member with FTD and realizes how important it is to be around family. Eric Zuckerman is also making an FTD documentary called, "Project Remember" which I'm honored to have been asked to participate in.

Had a conference call yesterday. Running it was Sharon Denny of AFTD, who was helping me and 2 members of "team Howard" Marc and Alice organize "end of life" and "rest of life" plans. There are others that will be helping, but Marc and Alice will help expedite things I need to get done along with help of some other close friends. I'm so lucky to have such loving friends around me. Without my friends I would've never made it. First on the list is my "will" and work on getting my disability from *Unum reinstated. AFTD is available to help those families or individuals that need proper guidance in dealing with future planning or learning about FTD.

There is also a link on the right hand side to a FTD documentary made by patient Susan Grant called, "Planning for Hope" which discusses long term planning.  

*Unum is the despicable Long Term Disability insurance company that refuses to reinstate my disability because of a legal technicality. They were already fined 15 million dollars and and forced to reassess 200,000 cases because of there unfair practices. A drop in the bucket for a 6 Billion dollar company. They are now cloaking there screwing of people better according to legal articles. Of course I always go off on a Unum rant, because it's proven when I was working I had FTD and was forced out. I may never get my disability reinstated, but I will be a pesky mosquito that they will have to constantly swat at.

Ying and Yang - The generosity of the individual helping me see my children during winter break far outweighs the screwing I'm getting from Unum. I'll make sure I keep that in my brain and make sure it gives me the strength to beat down my other FTD demon symptoms that haunt me. 

Any hope and acts of random kindness I get goes on for miles and is deeply appreciated.

*For those of you that have a firm diagnosis of FTD. I run an online support group. To join the FTD Patient Support Group, you will find instructions on the upper right hand side under links. 



  1. Howard, this is GREAT NEWS! Yes, stay positive and strong. Don't let Unum suck your life out of you. Peace:O) So happy for you.

  2. Thank A, I plan to keep going forever.

  3. thanks for sharing.


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