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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 > > >[log in to unmask] ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com