Thursday, October 3, 2013

To test or not to test?

Had a call from "Lady Brain" at Columbia University Medical Center. Forgot her name so Lady Brain works for me. LB does brain donation and is with the Columbia neurology research department. Have spoken to LB many a time and she helped me fill out my brain donation paperwork when I was living in New York. Incredibly sweet person. The call was to organize the "have brain, will travel" program after my death. To bad they can't ice cream scoop some of the dead area out now. Still working on weight loss and have shed 25 pounds. Don't think scooping out dead brain matter is cheating in the weight loss world. Hey, it's just as unnatural to eat a whole large pizza.

LB confirmed that I still wanted to donate my brain to science, so she'll be sending me the appropriate paperwork. We then started discussing my neurologist situation. Last time I spoke with LB was in NYC and I told her of my desire to keep Dr. Karen Bell on as my neurologist. Finding a neurologist who is experienced in FTD, knows me and whom I respect and trust is not an easy task. I take no medications and Dr. Bell knows my history and understands my needs and desires. LB also brought up me possibly doing some research tests which at the time I was fine with. I figure I would visit NYC every year or so and check in. Then again, the FTD monster can speed up at anytime. Then I would need help. Might be best to get a new Neuro here in Arizona. Oy, decisions decisions. What to do. A dilemma of gargantuan proportions.

Told LB of my dilemma and asked if she could check there at Columbia to see if anyone knew of an experienced FTD neuro here in Scottsdale/Phoenix. Then it happened. She asked. LB asked that if I return to New York would I be able to do neuropsych. testing. Upon hearing the words neuropsych testing I went into panic mode. PTSD, anxiety attack whatever you want to call it, came on fast and furious. It was an immediate deja vu of the tortuous times I went through. 6+ years of being misdiagnosed and put through every test known to man. 17 pills a day, SPECT, MRI and PET scans. 100 ECT's (electric shocks), VNS - Vagus Nerve Stimulator surgically implanted in my chest, spinal tap and on and on. The two tests that were the most brutal for me were the neuropsych tests. I've had two of them. Won't go into how difficult they were. All I'm going to say is never again. I've now come to a decision. NO MORE TESTS. I'm declaring now to the world. NO MORE TESTS. Unless there's a miracle cure or something to stem the progression, don't call me. I'll call you if I need something. As far as I'm concerned, I've paid my dues and done enough.


This is what I do now. Figure out how to get around obstacles caused by FTD/Dementia. Problem with my parking spot. I could never find it when I got home. Day or night. One morning I thought my car was stolen because it wasn't in my spot. Oops. Parked it a few spots away. Solution.  $1.99 for 2 reflectors. Now, day or night my spot is highlighted. You have a problem, don't bitch. Find a solution. Adapt and overcome.  I'm slowly losing my mind to FTD. Not going crazy.

Now you might think I'm selfish not wanting to participate in research that could help others and if so, so be it. My medical guinea pig days are over. I've had enough. I'm enjoying life and will continue to fight FTD and learn new paths to happiness and purpose every day. 

I think I do enough:
This Blog where almost 100,000 have visited
Howard's Brain film project 250-300 hrs filmed
FTD Patient Support Group
Other Support Groups/Forums
Speaking engagements
Brain donation to science

If God has the "do not enter" sign on heavens gate because of me not doing neuropsych testing, well at least I'm used to the heat from the Arizona summer.

It's up to each of us to decide when we've had enough testing. Once you have an FTD diagnosis you can stay with the medical testing programs and be poked, prodded and tested every year or more frequently for the rest of your life. Some people want yearly updates to how fast and where in the brain it's progressing.

Me, I've FTD. It's confirmed through multiple scans and tests. Everything else is ruled out except maybe a rare case of ingrained Flufferfoot. I'm done. All doctored out. No more. I'm going to live and enjoy my life for as long as I can. I take no meds for FTD. Zero. Is it easy fighting off the symptoms, hell no. But I've a wonderful life, it's my own and I'm making my own choices and am loving life. It's not easy, but incredibly rewarding in the accomplishments I've made and the contributions I will be making.

BTW - "NO MORE TESTS".

Howard



10 comments:

  1. Just to be clear, are you saying no more tests? Haha. Good for you, Howard! You certainly have done more than your part to help promote FTD awareness. It's your life, your choice.

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    1. Thank you Rita. Appreciate your feedback.

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  2. Brilliant solution for the parking spot. I don't blame you at all for saying "hell no" to the neuropsych testing - good for you. My mother went through round after agonizing around of it and they were ridiculously wrong (as well you know).

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    1. Thanks Marlene,
      Thank you for understanding. The neuropsych testing was brutal for me. Left me totally distraught.
      Howard

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  3. Hey Howard,
    Though I understand your reticence to more testing, I have gone the complete opposite way. I am on board with you as far as NO MORE MEDS!!!! and screw the psych evals...I'm F'd and I already know that. However I have the the MAP T-17 gene mutation so I am the "perfect" candidate (read Guinea Pig) for research in diagnosis techniques and progression monitoring etc etc etc. I have 3 children and each of them has a 50/50 chance of carrying this affliction. I just feel that the more I can do now; the better the chances are that this shitty condition can be beat. And my children will live a better life. Keep on keeping on Howard.

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    1. Hi A,
      I hear you and feel for you. If your showing symptoms your more than welcome to join the FTD Patient Support Group on Facebook. Shoot me an email: howardglickftd@gmail.com
      Howard

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  4. It's your life Howard and you have every right to live it out the way you want! Critics be damned!

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  5. I do understand Howard, I struggle with doing it for research purpose, or just stop, and live one day at a time on my terms. I must tell you that I admire you and this blog is amazing.

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  6. In the beginning, of testing, I saw where this was 'headed' and said to my Spouse, "Your call when you have had enough." He endured more, and said to me on the way home from the Clinic, "I have had enough!". Done. I TOTALLY get it.

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  7. You and my Mom sound SO much alike! lol She resists meds as much as possible. She did, however, start wearing a patch for her jerks/muscle spasms as they were really wearing her out. My aunt and I suggested she revisit the neuropsych. yesterday, but she decided against it. She said just what you said, "I have FTD, its going to get worse, I know I am declining, why rack up medical bills and have to listen to a Dr. tell me I'm declining:" It's her life, its her diagnosis. I say let her have control over everything she can, you too. Reading this post brought me comfort, knowing my mom has support from someone who thinks just the way she does. If she wasn't gay, I'd say you guys were long lost soul mates! LOL

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