Murray, What a wise man you are.  Your words of advice will surely
benefit many more lis members than Virginia.  As a new PWP I appreciate
the insight of those who have more experience.  Thanks again,  Claudia
Goldberg

MURRAY _CHARTERS wrote:

> 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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