Dianna,

I'm sorry to hear of your problem.

As I see it, we shouldn't be in a situation where we don't know if our therapies are working. It should be possible to collect enough data from a person to know whether something is working, by how much and, if it stops working, when the change occurred.

It should be possible to collect the data without the direct involvement of the patient: it just happens as you go about your life.

For instance, clothes can be made out of special cloths that collect biometric data.

I don't think that a "cure" for PD will be found soon enough to help me. BUT, and it's a very big "but", there are a thousand and one practical things that we can do now to improve the quality of our life.

Worth the fight?

John

I am sorry, but since you live so far away I have found someone new and will have to break our engagement. (Just Kidding, always wanted to write a "Dear John" letter.)

I agree that a cure is not likely in our life time. Which is why I fought the doctors about spending all money for a cure and none for improving the quality of life which was how it was back when I was diagnosed. My life wasn't over then and is not over now. Since then I have had two sons graduate from college, marry, one in the service, One a college proffesor, the other a lawyer, the third son has Asberger's (a very mild form of autism) was unable make it on his own at 30 yrs. and I was able to help him straighten out his life. He is now a complete working stiff, er, I mean Adult. I wouldn't have seen my 4 grandchildren, one who is in school. Both my sons are wonderful fathers. And I am as proud as aa Mom can be of all of them.

I am still going well and strong and am fortunate to have a genetic form as it is only centered in my trunk. Makes difficulty breathing, but I practice Oboe every day to fight that.

They say that what doesn't kill you makes you stronger. I have always been a survivor. Having Parkinson's has made me more aware of my body and more active in my community. It has strentghined my mental health.

Best Regards,
Your former, and regretfully Fiancee,
Dianna