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I have been a "lurker" since last June but have now decided to say hello.
(There is another Bruce Anderson on this list). My primary reason for not
sending any messages has been the fact that my employer is the Federal
government and I have been unsure how the computer folks here react to
outgoing messages to one thousand people.
 
I was diagnosed with PD last February.  I was in a neurologist's office
suffering from the effects of a myelogram test I had on my spine for back
pain.  He diagnosed the problem and the cure (a "blood patch" over the needle
hole in my spine which was leaking minute amounts of spinal fluid) and then
said, in effect, by the way it looks like you have Parkinson's Disease.  He
did a lot of movement, handwriting, etc. tests and then confirmed it.
Luckily my wife was with me so that I at least did not have to tell her.
The first week after the diagnosis was the worst emotionally, but for some
reason I just snapped out of it and seem to have accepted the situation
fairly well.
 
My current symptoms are slurred and difficult to understand speech,
stiffness, difficulty getting out of bed or out of low chairs, such as car
seats, totally unrecognizable handwriting (it wasn't particularly good to
start with), fatique, foot and toe cramping, difficulty sleeping, hand
tremor, poor balance, swallowing, and I have to take very small steps when
walking and turning in enclosed spaces such as a house or office - which
makes me look older than my 49 years.
 
Medication helps the sleeping difficulties, hand tremor and swallowing
problems at least (weird shaped Eldeprly pills still don't go down too well).
Currently taking 1 Sinemet  25/100 3x, 1 .25 Permax 3x, 1 Eldepryl 2x, 1
Symetril 2x, Vitamins E and C, Beta Carodine, Metamusil.  For sleeping take 1
Amitriptoline.  If I wake up with 4 or more hours to go before morning I take
another, if less than 4 I take a Melatonin.  Usually works.
 
I consider my neurologist a good one but I have learned far more information
about PD here than from my quarterly visits to him and from the literature he
provided.  Makes you wonder how the rest of the million or so PD people are
doing without the sharing of all this knowledge.  I am certainly much better
off medically, mentally (especially) and financially for it, and for which I
thank my fellow members!
 
Since 1991 I have been an employee of the Resolution Trust Corporation, the
Federal agency set up to dispose of the assets acquired from the Saving and
Loan failures.  It has been an interesting experience, but we have completed
our work and will be shutting down and turning the lights off on December 29.
Being unemployed in the Financial Services industry with PD does not promise
to be fun.  There are still about 4,000 employees, I believe, on the payroll
even though they have known for over a year the date "Sunset" was coming and
have been given all the help possible by the agency to find jobs.  Most are
former bankers (not S&L people) who have no chance to return to that
industry, where major layoffs are still occurring.
 
If anyone has anything more that is worthwhile to say about such matters as
finding a job with PD, working with PD, health insurance, making claims on
long term disability policies (including those privately paid for), social
security disability and general coping financially, I, for one would be
interested.  There has been some discussion here I know.
 
Although I am not close to needing a pallidotomy, I have a comment on it.
Even if it proves to be very longlasting, I do not believe this is the
ultimate answer, as some doctors and journalists have been implying, because
of the cost.  I have heard figures of $30,000 - $40,000 per operation.  And I
have heard that there are between 500,000 and 1,500,000 of us.  Assuming even
the lower numbers, the total cost is in the tens of billions.  I don't think
our broken health care system and aging population will be prepared or
willing to spend this kind of money on us.  It seems to me, though, that with
this kind of market the pharmaceutical companies would be hard at work, as
well as the NIH.
 
B. Bruce Anderson
[log in to unmask] (until 12/29 when I will have a new address)