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On 19 Apr 2000, at 5:25, Judy George wrote: > murray you are a gem Judy, you can call me names whenever you like! Thankyou! ... murray > i had been discussing my fears with my daughter today and one of the issues > is that one has no idea what each day will bring > one thinks it will all come like a tidal wave and consume > your words remind me that it is mostly? progressive and one will have time > to manage it > 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] > [log in to unmask]