 |
 |
On 30 Mar 99 at 8:01, Dan Parker wrote: > I'm new to the list. I am 49, was diagnosed with PD three years ago, and > refuse to slow down. Just got done working two years at an extremely tense > construction project in Saudi Arabia, and now I'm headed for a job in > Mexico. So far, the PD is only affecting my right side (rats! I was > right-handed! Now I've got two left hands!), but the Sinemet works fairly > well. Some days I can walk very proudly. > > I am interested in hearing from people with similar situations. How do you > cope? > Dan, below is a post I sent to this list over a year ago in response to a letter like yours. I've edited it to bring it up to date. I'm a Parkinsonian who can identify with your letter. I had symptoms at age 40, was finally diagnosed at age 49 and am nearly 55 now. I too would like to work until my maximum benefits kick in (at age 60). I would like to offer the following to you (and Jennifer and other newbies) I was not pleased with my first neurologist and tried others until I was satisfied. I wondered how I would cope and one very 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 fabulous "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. You will probably find it very beneficial to change your lifestyle to include routine stretching and exercise. 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 you Dan and you too Jennifer.......... Murray [log in to unmask]