just visited janets site
what a wealth of information
especially about visiting you doctor and empowering yourself for the visit
i will need my folder of info all marked a ready to go
judy

>From: Murray Charters <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: New Member
>Date: Wed, 19 Apr 2000 01:06:24 -0400
>
>On 18 Apr 2000, at 22:27, Kathleen A. Link wrote:
>
> > Hello.  My name is Kathy, and I'm 30 years old, and I am in the process
>of
> > being diagnosed with Parkinson's Disease.  My neurologist is pretty
>sure,
> > but is sending me off to a Parkinson's Specialist next week to confirm.
> >
>
>A Parkinson's Specialist at a Movement Disorder Centre, if at all
>possible, is the very best way to go when you need a second opinion.
>
> >
> > If I do have Parkinson's, I have had symptoms for the past 9 years
>without
> > knowing it.  Thus, when I go to the specialist next week, would like to
>be
> > armed with some really intelligent questions and information regarding
>my
> > condition in terms of medication, what to do, what not to do etc.
> >
>
>I posted some URL's for Doctor's Visit, Checklists, Questions, the
>Neurologic Exam etc. a little over a week ago.... They are on Janet's
>WWWeb Site at:
>
>http://www.geocities.com/janet313/pienet/wwweb/index.html
>
>Scroll down to: WWWeb Resources 09 - Doctor Visit
>
> >
> > If you were me, what kinds of questions would you be asking?  Do you
>think
> > there's any danger of being mis-diagnosed?  Ever hear of anybody who
>was?
> >
>
>I was misdiagnosed about 3 - 4 years after first symptoms and
>thought I was early stages of MS but that was later ruled out and
>I went several more years until symptoms progressed to the point
>my wife and a dance instructor decided I had Parkinson's.  I went
>to a neurologist and he took months to confirm.  Then I switched
>neuros and went to a Parkinson Specialist at a Movement Disorder
>Centre and he confirmed Parkinson's in minutes.
>
> >
> > This is all new to me, so I am very respectfully picking your brains.
> >  Thank you, in advance, for any information you can give me.
> >
>
>Yep, it's all new to almost everyone of us on diagnosis. The main
>thing is to not get overwhelmed by it all and trust me, that can
>happen...
>
>Here is a copy of a letter I posted in Jan. '98.  I'm 2 years older
>of course but these words still apply.  I've been meaning to dig
>this puppy out of the archives and dust it off so thank you for
>your post supplying the impulse....  Here it is.....
>
>  Posting number 36244, dated 16 Jan 1998 21:53:33
>Subject:      Re: Support Groups
>
>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
>.
>***************************************************************************
>
>That was more than 2 years ago... I still work, more than full time,
>and I believe more than ever in keeping as busy as possible.
>
>Kathy, I wish all the best for you and all the new members ... murray
>
>
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