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Dear Members:
 
I want to introduce myself to the list.  I am 53 and have been diagnosed with
PD since 1984.  My first symptoms started about five years earlier with
tremor in the left arm.  Slowly I started to drag my left leg and my left arm
was not swinging when I walked.  My wife called Kaiser (HMO) and tests were
started.  I eventually had five cat scans, MRI, evoke test, spinal tap and
cervical mylogram.  When nothing showed, the neurologist said I had PD.  He
gave me Sinemet 25/250 pills and said take 3 - 5 daily and I would feel
better.  He was right. I did feel better taking those pills.
 
In 1991 I was suffering from peak dose and end of dose dyskinesia (diphasic
dyskinesia).  I was planning on disability when I was asked to participate in
a research project at the California Parkinson Foundation on duodenal
infusion.  It changed my life.  I went from about two hours of productive
time daily to some days with 12 hours of quality time.  I am still on
duodenal infusion after about 30 months. I pump about 800 mg. of levodopa via
Sinemet and 2 mg of Permax.  I take 1 Eldepryl in the morning and I take
one Paxil (10 mg) to help my PD and depression.
 
Last Spring changes were happening at work.  I felt I was losing it so
decided to travel to Stockholm, Sweden for a Right Pallidotomy (left side).
The results are no dyskinesia, no uncontrolled sweating, facial expression is
back, left leg rigidity is less than right leg.  Speech is better.  The
Pallidotomy is not a cure, but it did set back many of my symptoms.  In July
the company had a downsizing and I was given termination notice.  I asked to
go on corporate disability.  I have been on disability ever since.
 
I am president of the Young Parkinson's Support Network of CA which has about
500 members.  I am editor of the monthly newsletter for YPSN and recently was
elected to the National Board of APDA.  YPSN of CA has about 13 who have had
the fetal tissue transplant and four with the adrenal transplant.  There are
many with pallidotomies and thalamotomies.
 
Of special interest to all is a future segment on the CBS TV program
Eye-to-Eye with Connie Chung.  YPSN was visited by a producer of this
program.  The subject is Young-Onset PD and the Environment.  The show is
currently scheduled for airing on Thursday, February 10.  So keep your TV
sets on that night.
 
Regards,
Alan  Bonander ([log in to unmask])