What's Happening To Me...?

One weekend roughly a year ago we walked onto our boat on a Friday evening after a long drive from NJ to Lake Champlain. When I woke up early the next morning to go to the rest room...I could not walk off. I had been fighting what I thought to be very sore calf muscles for much of the summer, but never did I have an issue with walking. We left to go home the next day canceling the rest of our vacation. I was bed ridden the rest of the week.

Test after test

We started making appointments with doctors. The first one was a nerve specialist...got tested...all results negative. The next one a muscle specialist...got tested...all results negative. The third one a Lyme disease specialist...all results negative. Another nerve specialist...all results negative. More nerve specialists...same results. Another rheumatologist....all results negative. Multiple x-rays, multiple CAT Scans, multiple MRIs...all negative. However the last rheumatologist suggested we go to U of Penn and seek a neuro-muscular specialist there. We had to wait 9-10 months for that appointment...! She was the first to mention Parkinson's however she said that we had to get a confirmation from a "movement specialist". Great I said...another 1 yr wait...! But she was able to hook us up with a doctor even tho it was via a tele-conference.

He confirmed her prognosis and here we are today 1 yr and 1 month later. Anyhow my whole world came crashing down. I was extremely active and my job required much physical activity. That boat on Lake Champlain I was telling you about...the restoration of it has come to a screeching halt. I now have a bladder that is not working so I have to walk around with a tube sticking out of my lower abdomen with a urinary bag strapped to my leg. I have severe leg pain and severe lower back pain and severe neck pain. I have difficulty swallowing. My gait has been greatly affected as I always start out shuffling my feet before getting into a somewhat more normal walk.

Unexpected symptoms

Until recently I was only getting 1-2 hrs of sleep per night because of the leg pain. That has pretty much been relieved by a prescription of Lyrica. I was having very severe depression and anxiety attacks. I did not know that a disease could bring on such a thing. I was always under the impression that depression was a by product of drug addiction or something like that. After seeing a counselor I was prescribed Zoloft and Ativan and my world has since returned to pretty much normal. I am now on Sinemet. I am still having a great loss of appetite as I have lost 42 lbs in 3 months or less. Due to the Zoloft and Ativan I feel I have gained a little of my appetite back.

Exercise is so important but presents a problem of course to to the lower back pain, neck pain, leg pain and hip pain. On a scale of 1-10 it is roughly and 8-9 at all times. I force myself to walk a mile twice a day. I ride a stationary bike for 2.5 miles in the morning. I ride a real bike 2-3 miles in the afternoon and or evening after dinner. Surprisingly other than a little calf muscle pain the bike riding (stationary or regular) does not hurt too much - go figure.

Fighting back

I am also back in the gym as of this week doing 1 on 1 personal training with my former neighbor who owns a fitness club and on the 17th of Sept 2020 I will start PT training at RWJ hospital. I am also going to have a surgical procedure in the coming weeks that hopefully will involve something like a pacemaker installed in my bladder to stimulate the muscles surrounding it to make it work again so hopefully I can get rid of this "bag". One more thing...thanks to my wonderful wife, wonderful friends and wonderful neighbors and also my various doctors I am hanging in there. If possible go all out and exercise as much as possible. If nothing else it will take your mind off of this awful disease and make it feel like you are at least fighting back.

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