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Hi Virginia;
I'm a Parkinsonian who can identify with your letter.  I had symptoms
at age 40, was finally diagnosed at age 49 and am 53 now.  I too
would like to work until my maximum benefits kick in (at age 60).

I would like to offer the following to your friend:

I was not pleased with my first neurologist and tried others until I
was satisfied.  I wondered how I would cope and one understanding
dr. advised me that in fact I had already been coping with all my
symptoms for more than a few years.  This single conversation gave
me a different perspective and started me managing my Parkinson's
myself instead of looking for others to provide all the answers.

Parkinson's sneaks in slowly and even though you receive a diagnosis
and suddenly "have Parkinson's"  it is just a name to apply to all
your symptoms.  Nothing has really changed.  Sure your Parkinson's
will eventually progress and of course you will have changes and
adaptations to make but it's not like a heart attack or stroke where
immediate intervention and changes are essential to life itself.

This means you do have some time to consider and manage these
changes.  I work in one of the building trades.  I am an elevator /
escalator mechanic.  It took a few months for me to decide to tell
people or not tell people.  Then I started with all of my family, the
union, my employer, friends, neighbors, and so on.  Everyone was
supportive.  I still work and I'm relieved that I am not hiding.

It is very important to find out everything you can about Parkinson's
because you will soon discover we are each unique individuals and
since you will only be seeing your neurologist once in a while you
will need to become the expert on your own case.  This expertise will
allow you to manage your PD.  and make the vital decisions facing you
with a level of confidence.

I didn't think I needed a support group but was talked into going to
the Early Onset Group locally to see what it was like.  I soon
realized what a nice bunch of people most Parkinsonians are.  They
all had something to offer and I realized I did too.  I learned from
their experiences; from education meetings; from volunteering for
clinical studies in the Movement Disorder Clinic; from books; the
Internet; and now from this "List".

My best advice is that keeping busy and keeping a positive attitude
is better than all the drugs known to mankind.  Yes, you will need
some drugs too.....but be informed enough to decide yourself (in
consultation with your professional medical practitioner of course)
when to start a regimen of drugs.  Be informed and alert to any drug
related positives and negatives and/or side effects so you will be
able to consult and have a role in adjusting medication to suit you!

Be prepared whenever you meet with your dr.   Make a list of your
feelings and your questions and participate actively.  Don't leave
until you are satisfied you understand and agree with your
treatment.

I hope this is of some assistance.

If you need to ask.... anything goes on this List and someone of us
will surely respond.

I wish the best for your friends.      Murray
.
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