Monday, June 24, 2013

10 Years of FTD

I was on up to 17 pills a day for 6+ years and tried just about every pill and mixed cocktail the medical community could concoct. The medical community believes I was having a paradoxical reaction to many of the drugs. Ativan made me manic and antidepressants made me depressed and suicidal. Of course since the meds didn't work they gave me over 100 ECT's (shock treatments) and implanted a device in my chest VNS Vagus Nerve Stimulator which is now turned off. I call this pacemaker type device "Space Junk." One of my main reasons for this blog is furthering awareness of FTD as so others will not get misdiagnosed and get mistreated like me. This blog has now crossed 70,000 people. 

I have one of the best FTD specializing neurologists in the country out of Columbia. She has me off all pills. Haven't taken a pill in 3 years. Yes, I have difficulties, but trying to treat FTD with unproven meds is like trying to hit a moving rabbit with a bow and arrow. FTD is a moving target. Constant change and progression of FTD make the type of drug and amount obsolete quickly with side effects causing drastic changes to the FTD'ers behavior and mood. There is a trend to prescribe less pills to those with FTD and lower the dosages. We now belong to the "Magic Pill" society where we are brainwashed into thinking there is a pill cure for everything. Nice fairy tail.

10 years of FTD and I'm doing okay. I hope to have another 10 years to go. My life is probably much rougher in real life than anyone can imagine but so what, I'm living life. I hear from and know many others now with FTD for 10+ years so I know I'm not alone and will be around for a while.

The last few weeks I've been mulling over moving away from NYC. Besides driving myself crazy,  I've been driving everyone around me crazy. I want to thank to thank all my friends who set up the fundraiser to keep me in NYC and I appreciate every penny that's been donated. Though we are in the middle of the fundraiser, I've decided that I will be leaving NYC. I was hoping the fundraiser would give me 3 years or so of stability, but as we all know everyone out there in FTD world is devastating financially. I heard of my first Homeless FTD man a few weeks ago. I'm sure there more out there we don't know about. Luckily his Church has stepped up to help me. Thank God we have religious institutions that are there for people in need. I consider myself to be extremely lucky for everything I have in life.

A few months ago I went to Florida to check out possible places to live. Lake Worth and possibly Tampa are my plan B. Plan A is Arizona. Florida is hot and humid with Arizona being desert hot and dry. Arizona is much closer to Seattle where my teenage children reside. I miss my kids and the Florida is the furthest point in the US from Seattle. 6 hour flight with a 3hr. time difference. I spoke at the Arizona ALFA conference last month and was incredible impressed by the Assisted Living in Arizona which is known to be some of the best in the country. The people I've met from ALFA were extremely nice and have offered to help me out a bit if I decide to move there. FTD is such an isolating and lonely disease. Either people don't want to be around us or we drive everyone away with our madness. I've plenty I want to accomplish and with the right setting and a bit of help, I could make much progress. This blog, the Howard's Brain documentary, the numerous support groups and forums I belong to including my FTD patient group, as well as the book I started and haven't written a word in over a year. It's about halfway done. I've many project and I'm not sure how much time is with me or against me. 

For the last few weeks I've been planning a trip to Arizona and not blogging. Planning is so, so difficult. I used plan and fly 120 flights a year for business and spend about 200 nights in Hotels. I think the only reason I've been successful in still being able to plan. Days on little minutia details for this trip driving me crazy trying to plan and organize. I did find a hotel for $36 a night and rental car for $12 a day. Bedbugs not included.

The Fundraiser is still up. The money that's been donated, was donated to try and help me stay in NYC.   I'm extremely grateful. This money is helping me here now and I will use this to relocate and get settled. If anyone feels upset that there donation won't be used to keep me in my apartment, please contact me or Alice Walton on the Gofundme site and your money will be refunded. As I stated earlier, the fundraiser is still up and any donations made will be used expressly to help me relocate and get settled.

Tomorrow (Tuesday) I'm off to Phoenix. Wish me luck. Nothing like picking up and moving with FTD to someplace where I really no no one. I feel pretty alone here and it's extremely possible that I will wind up totally alone there. My life, my decision. Either way I look for an extremely productive way to finish this life off. 

I want thank Joe Becker, Marc Turkel and Alice G. Walton for all the work setting up the fundraiser. I'd like to keep it running to help me with relocation and get settled, but if they want to take it down I totally understand.

Will be in Arizona for 9 days and would love to visit any of you out there. Will be mostly around Phoenix area with possible trips to Tucson and Flagstaff.

 I'm planning on making Arizona a new beginning and not the beginning of the end. 


My friends have set up a site to help me since I've run into unforeseen difficulties. Please visit the site below to help me with relocation and resettling. Thank you.

Thank you all,


  1. G-d bless you, Howard. You and the patient support group you set up have been an amazing source of support for me. I will be returning the favor you did for me. I think this move will be a good one for you. And with the ALFA there to help you, I think you already have friends who've got your back. Except for the friends you're going to miss in NYC, I think this is going to be a good move for you and a lot less stress.
    Good luck with your trip to Phoenix. I think this is going to be a nice fresh start on the second leg of your FTD journey.
    As I said before, I am always here for you, even if it's just to vent, even of I'm not just across the bridge. :-)
    Good travels, my friend.
    Best, Sheryl

    1. Thank you Sheryl,
      That was very sweet.

  2. Hey for sure give me a call Howard! I have lived here for almost 20 years; the last 3 with dementia. If you have any questions or need any insight from living in Phoenix with dementia be glad to help.


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