Re: New members; Julian and Emily

[Murray Charters <Murray_Charters@xxxxxxxxx>]

Hi Julian & Emily,
I offer the following updated letter to you and to all
the recently diagnosed...

(Mr. PD came to my house some 25 years earlier than at
yours but the basics are the same...)

I'm a Parkinsonian who had symptoms before age 40,
was finally diagnosed at age 49 and am 57 now.  I would
like to work until my maximum benefits kick in (at age 60).
I still work and my life is pretty normal in spite of some
noticeable symptoms. (slow, shaky, etc.)

As others have suggested, a Movement Disorder Specialist
is recommended for Parkinson's. Since your e-mail address
is <jeimages@xxxxxxxxxxxx> I will assume you are
Canadian and live in Ontario...  If so, ask about the
excellent facilities there and we will get more info for you.

I live in Vancouver and attend the Movement Disorder Group
at UBC.

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. We have moved from a large house to a
condo. I no longer drive extensively, but I do still drive.

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 lifetime 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've tried all the Vitamins and minerals and pretty much found
them of little real benefit but I do consistently take Vitamin E.

I hope all of 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 very best for you.      Murray
.
**********************************************************************

On 25 Dec 2001, at 16:30, Emily and Julian Brinac wrote:

> We are retired. My husband Julian, 65 years old, has been diagnosed with
> Parkinson. We found your Web information on CNN WebMed, listing your
> resources. As a husband and wife, we are helping each other through any
> health problems. However, we understand that Parkinson is a long term
> debilitating disease and we will require endurance. As we are new, we do
> not know the rules of our contact. However, we would need a feedback.
> Julian is taking a # of supplements for energy, e.i. Vitamin C, E,
> Coenzyme Q-10, Lipoic acid. Nothing seems to help though with his
> handshaking which is at times violent. He is very irritable. Our family
> doctor does not have anything against supplements but did not review
> them individually. Doctor does not want to start my husband on levadopa
> or other drugs due to side effects for as long as my husband can manage
> without them. We asked to be sent to neurologist. After negotiations,
> our family doctor agreed to that.
>
> -----------------------------------------------------------

* * *
Murray_Charters@xxxxxxxxx

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