coming to terms with PD diagnosis

Coco,12 years later I'm still experimenting with dosage,and timing of meds.All of this time I've been on levodopa,and it is still dramatically effective for me.During my on time I can do most activities that friends,and family can.I'll shorten this up,and come to my point which is the fact that pd is a life long challenge.Stay well informed about it ,and try not to let it run your life.Interact with as many people with pd as you can ,and plan ahead.It is a progressive disease,and you need to account for that.One individual along the line has termed this expression"pd doesn't have me I have pd"Wish you the best.Keep seeking the best weapon against pd knowledge.Ed

My doc gave me the dx of "suspected PD" about 2 years ago (when I was 47)--then confirmed by a PD guru doc about a year ago. It really freaked me out for a while but I feel like I have come to terms with it I still fight not to get down about it but I can say it is not the center of my life--just one thing I have to deal with.

My main symptom is Dystonia in my right foot which makes it hard to walk or run (I have always been an avid excerciser) so I do not have a lot of the symptoms others have of not being able to move well, although I do get shakey, especially when under stress, which is a bummer and I have to pay attention to the volume of my voice as it gets quiet. I tried the dopamine agonists but they made me sick and tired so, at the recommendation of 2 different docs, I reluctantly got on Simimet about a year ago. It really takes care of my dystonia. I do feel like my head bobs a bit though my wife says it is not as bad as I think.

I have not told anyone but my closest friends and family and I feel like that has been the right choice, especially in terms of not letting myself be defined by PD.

So even though that may not all be good news, I can honestly say the part it sounds like you are going through only lasted a matter of months for me. I have read a lot, both in books and on the web, and I am optimistic that I can continue to oive a relatively normal life for a long time.

Good luck.

Coco and Pebbles,

I have just finished reading a book by Michael J Fox, the only one of his which I have liked. It is called A Funny Thing Happened on the Way to the Future. The philosophy which he expounds is that we are what we are and if that means that we are people with Parkinson's then we have it and we should live our lives recognising that PD is part of who we are. I endorse yekkimo's advice: accept that you have PD, learn all you can about it and take charge of your own treatment. I don't mean ignore professional help and advice but be part of the discussion - it is you and your body involved after all. Under advice, vary your medication until you get it right. Remembering that your condition will be constantly deteriorating and so you will have to be constantlyl monitoring the sucess of your treatment regime and altering it accordingly.

I found it hard to tell others that I had PD. I denied that I was in denial but argued that it was dificult to work the subject into a conversation. My wife took matters out of my hands and told all and sundry. I am (now) happy that she did as I have become so much more involved in the PD community and have become better at managing the disease as a result.

You will find that exercise and interests are important in whether you live a life in which you happen to have Parkison's or whether Parkinson's lives your life for you.

Good Luck
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