need more than luck
 

Peg - your statement comes close to why I posted the question of uncertainty. No one is guaranteed a future of certainty - we all know this.

But, as a person living with Parkinson's, I would hope medical research would be able to predict disease course of progression with more accuracy.

I consider myself "lucky" that my PD has progressed slowly. I think it is absurd to base a future living with PD on luck, not knowledge.

Not only are we looking to science to cure our disease, we are looking to science to help us understand the disease. We, the patients, do know more about PD than anyone else; increased interaction and communication with patients is the only way progress will be made.

I read what others have written and marvel at the ones who feel Parkinson's has made them appreciate each day and has basically made them into better people.

I just don't feel that way about myself.

Parkinson's to me is like a darkening cloud over my head. Parkinson's has blunted my personality and taken a lot of the joy and hope out of my life. I am not as confident, and each skill taken away from me on the drip, drip, drip of erosion of my abiities makes me just plain sad and undeniably angry. I am sad for my family when I see the concern in their eyes. They don't deserve to have to worry about me. I don't want help or pity or sympathy. I have the love and concern of others, but I guess I am ticked by not having what I see others have - normal gait, steady hands, easy smile. I just want to be me as I once was. I want to dance, to enjoy my grandchildren without hesitation, to not be assisted by a friend when getting out of the car, to not have people constantly asking me how I feel.

I want to be normal in the normal loops of life. A while back I had one of those brief times we all probably experience when for a few seconds, a flash in time, the disease seemed to disappear. I was in the car and a song was playing which made me sway and bob to the beat. My body was relaxed and loose. It was golden.

I realize my attitude does not inspire others, but I am being truthful.
I guess I am spoiled. I just want to be well.

Ann

"I consider myself "lucky" that my PD has progressed slowly. I think it is absurd to base a future living with PD on luck, not knowledge."

I relate more to statements like this as the years go on, the whole uncertainty about everything, disease, treatments, progression, is disconcerting.

Then there are the moments that AnnT talks about, when magically I am myself again, and then that little window slams shut, and I don't know when it will open again.

I play a lot of music these days, it takes me back, and sometimes it takes me out of myself too. A lot of the time it is more helpful than most of the things we are recommended to do....

I try not to think too much about the future. Soon I will have another big life change, my youngest is starting to prepare to leave home, and then for the first time I will be on my own with PD.

For many reasons I think I will be glad of that. It just ain't a dignified disorder .......

On the other hand - no I shan't go there right now, time enough when it comes.....

Lindy