Its time to get back to my memories of how it felt when I
was misdiagnosed or undiagnosed and then first diagnosed with PD. For you I
hope that you will gain a perspective of how this disease shows up on your
doorstep, uninvited and often unannounced. You could argue that these are characteristics
of most health problems. But PD can be stealthy and I could not understand why
it continued to baffle my doctors, announced or not. For me, writing about this
part of my experience seems cathartic so far. So please bear with me. This was
not a good part of my life.
After my episode of yes you do, no you don’t, have ALS, I
was sent for another MRI. What you don’t know is that of all the things I have
done willingly or unwillingly, getting into an MRI tube is exactly 10,000 times
harder than the next hardest thing. And I don’t know what the next hardest
thing might be. (It might be typing. I am a one or two finger typist with PD.
Sure I can do it, but it’s not pretty.)
So when Neurologist number two told me to schedule a visit to panic
land, I wanted to know why. He said my symptoms were not consistent with
anything except ALS, which he said I did not have, so he had to look beyond the
normal. In my case he suspected a tumor on my spine just below the skull. But I
kept hearing ALS.
So I gritted my teeth, convinced myself that I had the
strength to exert mind over matter and got strapped in for the 20 or 30 minutes
it would take to torture me to the edge of insanity. A lifetime later, I was
sliding out of the tube swearing to myself to never allow this to happen again.
As it turned out, the torture was a waste of time. No tumor on the spine.
Conclusion reached by number two, Parkinson’s Disease. I remember vividly when he
told me by saying “I’m sorry. But you have Parkinson’s.” Now from all my
research on neurological diseases, I knew PD pretty well. I knew that it did
not kill people and many with PD were known to live productive lives. I knew
that if symptoms reached a certain level, medicine could help to alleviate. He
had nothing to be sorry about. I wasn’t going to complain. When the options are real bad news or not so bad by comparison news, choose the latter.
And to his credit, the doctor was encouraging and positive.
His prognosis for me was that I could work for another twenty years if I wanted
to. I was in my early sixties so I felt that I would complete my career on my
schedule and not :Parkinson’s schedule. After having and then not having ALS,
this was all very good news.
But I wasn’t done with ALS. Or it wasn’t done with trailing
me around. I will explain in my next post.
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| The Hudson River |
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