So it was around 2006 or so, and I was just told that I had
PD. Neurologist number 2 was a generalist in his practice, not a PD or what is
known as a movement disorder specialist. Number 2 told me to find another doctor,
someone who specialized in PD. He offered the names of two or three who had a
group practice at his East Side hospital. But when I called for an appointment,
they wouldn’t take me because they were too busy. I tried to explain everything
I had been through trying to get a diagnosis over a two year period, the
misdiagnosis, the ALS test, the brain tumor, the spinal tumor. They clearly didn’t give a shit. They were
busy. Call back next year. So much for the Hippocratic Oath. Since I couldn’t find a doctor that
specialized in PD, number 2 kept me on as
a patient for a few months. And for this, I was grateful.
I eventually found Neurologist #3.
After a few visits, Neurologist #3 noticed my weak and withering
right shoulder, chest and arm, along
with a slight dragging of my right leg; he immediately suggested that I pay a visit to his hospital’s movement disorder center to review of my conditions
and symptoms. As soon as I began seeing #3, he started me on standard PD meds.
These are powerful brain meds and it is as much an art as a science to prescribe
the right mix. I was not yet stabilized when I saw the docs in the center.
Actually, I was getting sick daily for weeks until we got the right balance . As
it was, there were a lot of symptoms that were out-of-the-ordinary and that
kept doctors thinking beyond PD. Some responded to the meds and some did not. In
addition to muscle atrophy, weakness of the atrophied limbs, a tendency to just
let my right side hang and and go along for the ride, Also annoying was the
inability to catch my breath. The most severe and, for me, most depressing
because it was something I had to look at in the mirror every day was losing
my muscles and watching my right side become a diminished, sickly
comparison of my left side. I admit that I am somewhat concerned with my physical
appearance (Can you say vanity, boys and girls?) . So I would wear clothes that
would cover the bodily deficiency so I wouldn’t be reminded of PD or whatever
the doctor teams were lookinIg for. This was hard for someone who had been fit
and active for the first 60 more or less years of life. Hard is the wrong word.
It sucked. (That is past tense in case you didn’t notice.)
Other symptoms of the lesser annoyance tribe included constantly
feeling sensations of someone touching my shoulder along with a feather brushing down
my face.
A couple of weeks later, after a consultation with the
movement disorder group, I was scheduled for yet another ALS, Lou Gehrig’s
disease, test. They had explained that they knew of rare cases of false
readings and conclusions on this test. I couldn’t seem to shake ALS stalking me
psychologically. I took the test without anyone accompanying me. I decided I
was not going to let it get to me. I decided the test had to be negative. Not
giving in. Period.
A youing male doctor administered the test and followed the
printout with too much intensity for my way of thinking. After a few minutes
where I watched him re-read the same pages three times, I asked for the results.
He didn’t respond for a few too many seconds. He then said that he had to discuss
with his supervisor. There was something that he had to review. In my mind, what’s
to review. Was it positive or negative? What part of this was confusing? Just
then the older doctor came in and stood with their backs toward me and pointed
here and there on the printout sheets while whispering between themselves. If I
didn’t have ALS, what would they be discussing? I had the same resignation feelings
as I had when I read, after my first ALS test, that the patient had tested
positive.
To this day, I don’t know what they saw or discussed. I don’t
need to know. I don’t want to be tested again. But the results were negative. I
did not have Lou Gehrig’s disease.
Starting with the next post, I will move past diagnosis to
set up my path to recovery from Parkinson’s, a surprising and what I think is a
remarkable reversal of symptoms, a new drug, a new doctor and a new physique (actually,
just the old body rebuilt almost as good as new). I will try to post some recent
workout photos of me over the weekend to prove to you that you can do it too.. Along the way, I will offer a list of things
PD is and is not. I also hope to introduce or present one or two inspirational
PD “victims” whose remarkable stories you will enjoy. I will enjoy telling you
about how, after I thought my professional career was over, I got to go back
and be productive for five more years and effectively start a new career at age
70. Finally, I will describe and refine
my Resisting PD 12 Step Program. It is what I have learned through trial and
error as my way to resist Parkinson’s disease. If you or someone you decide to
help, can take what works and short circuits some of my errors and achieves
some early PD resistance success, please let me know. It will be something to
remember.
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