It was September 16, 2014 – I was at Mayo Clinic in Rochester, Minnesota seeing a movement specialist native to the nearby town of Sewickley. Out of the few neurological specialists I had seen to date this doctor was, without question, the most thorough in his examination.
A quote by Dr. William J. Mayo in the medical center’s chapel in Rochester, Minnesota.
He started at the tip of my head and went to the tips of my toes touching everywhere except T-H-E-R-E, and maybe another T-H-E-R-E or two. His conclusion was the January 29, 2014 diagnosis was true. I was indeed now living with Parkinson’s Disease.
He then ordered me to undergo an MRI the next day, but in the immediate 24 hours preceding I had to carry a gigantic bucket with me everywhere I went and tinkle into an accompanying plastic cup before pouring the warm liquid into the aforementioned bucket. “Don’t worry, everybody in town has seen these being carried around at least once. We do this all the time,” he said. I was reminded of that about three more times by others before leaving for the hotel room. (Of course, the biggest urination situation in that 24 hour period was the only one that didn’t make it to the bucket. Although I’m sure they had plenty of urine to work with when I turned it in the next day. To this day I hope that I didn’t piss anyone off!)
The doctor also ordered a DAT Scan which couldn’t be scheduled at Mayo for several weeks. I arranged for one at UPMC which I eventually canceled. Why? Well aside from the fact they only perform them on Tuesdays and I had a very whiny co-worker at my place of employment who felt put upon when he couldn’t have his normal days off, (“Eric, I know one must do things to ensure proper health – and sometimes on days when they have other things scheduled, but…”) the results of the MRI showed no other issue. No stroke, no tumors.
Also, the DAT may have shown things maybe a bit more in-depth. But here’s the kicker… I would have had to lie on a table while a camera revolved around my head for 45 minutes doing whatever it needed to do. One small move and we would have had to start all over! Now seriously, what dunderbrain came up with that test for diagnosing a MOVEMENT DISORDER?! Additionally, now I am recalling it would have taken up most of my day sitting in room somewhere for some reason in addition to 45 minutes of trying to play statue while my body rebelled against my best effort.
The Mayo doctor also said it was best to remain off meds – particularly dopamine agonists – for as long as I possibly could stand it. I made it to 2 1/2 weeks shy of 4 years from that date before starting the tried and true Carbidopa-levodopa with which I have just celebrated my unbelievable 6th anniversary of consuming daily.
Over the last 10 years, while I’ve continued to live life normally to the best of my abilities, I have felt symptoms wax and wane. But not knowing for sure what symptom is going to happen with each passing day, hour, minute, is probably the worst of it.
I remain grateful to most of the practitioners (there are a few along the way I could have done without) who have seen me through to this point. But I am more so grateful to all of you who may not fully understand my day-to-day life (I’m not sure I understand it either!) but who are supportive of my sometimes last minute re-routing of of things based on how I am feeling.
A few years ago I dubbed September 16 as “Eric’s Avengers Day” in the hopes of gathering a group of us together for the local Parkinson organization’s annual walking event. Well, sometimes the best plans don’t work. The local organization has had some pretty bizarre bumps along the way, although still in full operation. Add to that their event the last few years has been in tandem with other, similar events of which either Annie and/or I were involved. And it seemed apparent that many of our supporters had similar conflicts or never felt called to participate. That’s okay.
In spite of all that, I am still hoping to make this “Eric’s Avengers Day” thing into something albeit on a small scale… any ideas?? I’m all ears.
Happy Eric’s Avengers Day… keep doing what you’re doing in spite of the obstacles.
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