Dear Keith VanDenburg: Thanks for your reply and more of the story. Quite
interesting to me. What a saga with the several physicians! Glad that you
found someone that you can work with.
I was very lucky in that regard. My internist is a young man who is
very open and listens well. In considering how to get a diagnosis, at the
very beginning, we discussed in detail the kind of neurologist that I
wanted. He in the end sent me to the Chief Resident in the Movement
Disorders Clinic, rather than the Chief. She, then brought him in on the
consultation to back up her judgment. Then he left the university. And she
has completed her residency and has moved to another clinic in Nashville.
I have gone with her, and am very pleased with the ability to work with, to
communicate well with her. I was started on Sinemet, 20/100, 3x. At the
time, I had my left arm at 45 degrees, not swinging it at all, taking
short steps and walking slowly, shoulders drawn up, voice failing me, and
feeling extremely anxious, almost a panic when having to face my classes.
Sinemet was like magic; within the week I had lost most of the symptoms and
was back to feeling like my old self. Voice returned, shoulder swung and I
faced the classes with confidence. A month later, I was started on the
Eldepryl, 2x; this has continued to be the basic regime.
Soon, I found a biochemist that specialized in dietary supplements
to get the basic body system functioning. He did a urine analysis, a hair
analysis for trace minerals and metals, and a live blood analysis. I was
started on a complex regimen of vitamins, minerals and amino acids, that I
have cotinued. I have been able to gain about 10 lbs; totally impossible
before; I was very thin. I have now control of my intestinal gas problem
and the constipation, and I feel that my basic metabolism, which was out of
whack before, is now doing much better.
I also consulted a homeopathic physician who liked what I was doing
with the biochemist and added, with the biochemists agreement, phosphorus in
homeopathic dosage. All of this coordinated with my neurologist.
And I have been taking physical therapy with a Feldenkreis trained
therapist, who has a very well developed approach, very complex and gentle,
that loosens up my stiffness. I take it monthly and then do exercises that
she prescribes in between to keep the flexilibility. That approach has
worked wonders with me, particularly in the shoulders.
That on top of my regular exercise routine: Two days a week: 20
minutes of very brisk walking (with a partner), run for 1/2 mile, and
5-10 minutes on Nordic track machine. One day a week: 30-45 minutes on
Nautilus machines for strength training with a trainer (one of my graduate
students). That is done very carefully so as not to overdo it, and is coor
dinated with the physcial therapist.
As I said, I have had a progressive development of pain, like bursitis
in my shoulder muscles, and a tightneess in the upper body, since January. It
is not apparent to the eye, but I can feel it and there has been a restriction
of what I can do on the machines. I imagine that I should be increasing the
Sinemet dosage, but have resisted that to date. I have an appointment with
the neurologist this coming MOnday, so I will see what she says. I have
really resisted going up on the Sinemet level, even when she has suggested it
in the past, to anticapate major exercise (such as a skiing day that I did
a year ago). I am afraid that the Sinemet side effects will build up on
me. Do you have any experience with that? Anyone on the network have
any experience? Question is: Do we have a kind of lifetime limit of Sinemet
that we can take before there are sideeffects? Or is it merely the level
of the medication and what one can metabolize.?
Thanks for your reply, and I look forward to hearing from you again.
Bob Newbrough ([log in to unmask]"
