Print

Print


Hi Bob,
   I have read with interest your description of your "puzzling
   experience" whle vacationing in Boulder. My name is Linda Husvar.
   I was diagnosed with PD in Oct., 1992, after consulting a
   neurologist who was treating my husband for MS. My first
   symptom was a tremor in my left hand, and I have been very
   "klutzy" since early childhood. I also had problems with balance,
   diminishing voice volume, stiffness(which I  sttributed to arthritis),
   swallowing, vision-impairment, and sometimes mental confusion. The
   neurologist put me on 25/100 Sinamet, and later 10mg.of Eldepryl
   (in a.m. and noon doses) as well as Deseryl to facilitate sleep
   (50, then 75 mg. at bedtime).
 
   Last July, this doctor quit treating people on Medicaid and similar
   insurance programs. I had been to a second neurologist for a second
   opinion to whom I transferred my records. He did not agree with the
   PD diagnosis, attributing my problems to chronic anxiety and situa-
   tional/clinical depression. I have done a lot of research in
   preparation to return to work as a medical social worker speciali-
   zing in rural/small town home health aid. The more I read about
   bio-psychiatry and how organic problems are often mistaken for
   functional ones, the more determined I was to seek yet another
   opinion. Dec.10th I will be seeing a PD specialist at Cleve-
   land clinic. (previously I had been treated at Edwin Shaw Rehab.
   Hospital for OT, PT, Communication Disorders, and Stress-Mgmt.)
   I do agree with my neurologist that I was overmedicated. I have felt
   much better since eliminating Eldepryl and Sinamet, but not as well
   when I was on a 1/4 dose of Sinamet CR 50/200.(my first doctor had
   switched me to the Sinamet CR a few weeks after starting the 25/100
   Sinamet to help reduce "on/off" problems.
 
   To get back to your problem with completing your run in Boulder, I
   would like to offer some suggestions. Your wife's theory about the
   dopamine depletion sounds plausible. You could be experiencing a
   lot of on/off periods because there does seem to be a direct
   relationship between exercise levels and medication effectiveness.
   I am surprised that no one had mentioned Sinemet CR as an alterna-
   tive. It is a controlled release medication which is known for
   reducing such on/off periods. we have a PDer in our support group
   who uses both CR and Immediate Release Sinamet 10/100. He says that
   one can chew the blue (10/100) pill for a boost during a "stuck"
   situation such as yours. Of course, the ONLY person who can
   skillfully advise you about medication changes is your doctor.
   If you haven't done so lately, talk to him!
 
   I like to ride my horse as often as possible, especially on the trails
   at our local state park. I was not allowed to ride for several months
   last winter but resumed riding as soon as the doctor said o.k. I
   had periods when I stumbled around the barn, but I had trained my
   horse, Sammy, to help me and tolerate my tremors and balance pro-
   blems, much like a good therapeutic riding horse. I found that once
   mounted, I could balance much better and ride better than I could
   walk. (I often had a zig-zag walk.) they say in therapeutic riding
   that horses help wheel-chair bound riders because riding is the
   only activity that similuates walking. Apparently this has some-
   thing to do with the vestibular system. Any comments about this or
   similar issues in exercise?
 
   Bob, if you have any ideas about the bio-psychiatry issue in my
   conflicting diagnoses, please drop me a note. There has been an
   incredible amount of stress in my life with our physical and
   economic problems, but these have been occuring many more years
   longer that the onset of my tremors,etc. The deseryl seems to
   help a lot as well as my faith. I believe we should all try to
   keep a positive attitude as much as possible and to look for the
   humor and simple lessons in life.
 
   That's all for now, and I hope other Internet readers will offer
   their input too. Thanks!  Linda