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thanks as ever murray seems like great advice and to stress the individuality of pd is important this site helps in understanding the uniqueness of the disease 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: PD Case profiles/history >Date: Tue, 25 Apr 2000 02:34:32 -0700 > >On 24 Apr 2000, at 20:05, YH Tan wrote: > > > As a new early onset PD I would like to > > know how other early onset PD patients progress over > > the years. This is so that I have a better > > understanding of what lies ahead. eg. age now, age > > when disgnosed, age of first symptoms, what > > medications & when started, any surgery and condition > > now. > > > > Would those members on this list care to provide this > > information on this list or send it directly to me. > > Or is there a Web site or organisation that compile > > and update these information for Early Onset PD cases > > ? Please help. > > > > YH > > 42, DX42, 38 symptom > > > >Dear YH, >There is no registry or database, as far as I know, where >you might be able to derive "averages" or other stats. > >That said, my experience is that we Early Onset do as well, and >in many cases much better than the overall average when it >comes to a generalized concept of the "progression". > >We are all very individual in our unique Parkinson's but if you >keep busy and positive, as I do, what lies ahead will be many >years of a very productive somewhat modified life. > >I also had first symptoms at age 38 - 40 and I am just about 56. >I have not had any surgery. > >****************************************************************** >Here is a copy of a letter I posted in Jan. '98. I'm 2 years older >of course but these words still apply. > > 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. > >I wish all the best for you and all the new members ... murray > > >[log in to unmask] ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com