 |
 |
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]