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Re: Struggling or in Denial?

I’m a male who just turned 60 in October and was diagnosed in August 2013. I’d been a corporate guy for 37 years and an avid athlete all my life (D-1 Tennis in college all state baseball in HS) and married my HS sweetheart 40 years this June with two adult well educated children each with one child (grandson 13 and grandaughter 11)…this diagnosis was a shock and believe I spent the first two years in denial as I sought out and followed the protocol of trying various cocktail mixes of PD drugs as I felt I was just going through the motions. It wasn’t long after the initial two years when this ugly disease showed its true colors as my gate began slowing changing while my motion slowed all the while urinary issues began to slowly occur of which I had never ever had any sort of issue with which for a male of 57 was very unusual. Over the next year I underwent the “turp” procedure for my urinary issues which in just I called the male version of birth!! Though the surgery went well here I am over two years removed from it and still wear a pull up I think more for confidence though some slight problems do occur but are more rare , however ED is now an issue from this surgery. Over time my gate and waking in General had become challenging and it took nothing at all for my body to get soooo tired out so easily that finding my sofa or my bed was common occurance….additionally my speech was weakening and slurred so I went through the loud program for PD and it was great and worked well at that time.

Deep brain stimulation

After much research and interviews I elected to have the DBS brain surgery. After passing all the tests to be a candidate I underwent phase one of DBS brain 12/21/17 and phase two (conect the probes and chest device) 12/28/17. The surgeon and surgery were great and went as well as anyone could hope for!!!!.. except, and to be clear through no fault of anyone or anything, here I am over 14 months removed from this extensive procedure and having been programmed re programmed and tweaked a dozen times and I’m that rare exception which this procedure has not provided one single area of relief for me!!! This was to be my “Hale Mary” so to speak therefore I’ve been more than a little devistated to say the least over a year now looking for answers or anything which may bring me some temporary relief!! I changed to a new neurologist in January who specializes in motion diseases and knows her way around programming the Med Tronic device I have and though only two visits thus far I’m feeling just slightly better and she’s pushed me back into physical therapy and I’m going to re start speech again as my voice is back weaker than its ever been barely a whisper at times.

It’s easy to give up on life under these conditions but the reality is if indeed you have any sense of high level athletic background or simply a very competitive person, I find these traits to be totally opposite of being a quitter and certainly not consistent with suicide.

Put an end to PD ASAP

Well this is the executive summary version of my long drawn out soap opera thus far in my fight against this extremely ugly monster aka Parkinson’s!!! I’m a very open person so should anyone have any comments or questions I’ll be more than happy to engage with anyone.
In closing I’d like to exploit my private daily prayer or wish if you will…please please please Michael J Fox foundation, all others striving for a cure and especially the FDA, for God’s sake with all the technology, great minds and $$ resources we have in and outside of our country, let’s put an end to PD ASAP so it’s no more than a common cold to the human race!!!!

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