Your stories: Ask for help, and take control of Parkinson's disease

Louise Powell Whitney
http://www.democratandchronicle.com/.../HEALTH/711...

(November 28, 2007) — "Do you have Parkinson's disease or does it have you?" The question took me aback at first, and then I made my choice.

I was diagnosed with Parkinson's disease in 1997, just prior to my 51st birthday. I'd noticed that my left arm didn't swing when I walked. That's all.

That same year my husband, Dennis, and I moved to the People's Republic of China. Dennis was on assignment with Eastman Kodak Co. I played. I shopped, explored the city, taught conversational English, planned travel throughout China and Southeast Asia and, mostly, walked. I'm convinced it was all that walking that held my symptoms in check.

Research is showing that exercise can slow the progression of PD. Here I am, 10 years post-diagnosis, still able to dance, downhill ski and get down on the floor — and back up again — to play with my granddaughters. I don't dance all night, I no longer tackle black diamonds and I groan a little rising up, but I'm out there.

Twice a week, I head to my Stretching the Limits exercise class, a program of the Parkinson's Support Group of Upstate New York (PSGUNY), in conjunction with the University of Rochester. At these classes, held at the Jewish Community Center, we work on improving our balance, strength, gait, voice strength and especially "rise and shine" — getting down to and up from the floor safely.

Surprises? There have been many. I anticipated that my balance and motor coordination would deteriorate. It surprised me, however, to learn that my cognitive abilities would also be affected. Just as my physical movements are slower than they once were (bradykinesia), my thinking is slower too (bradyphrenia).

Another surprise was how difficult it was emotionally to complete the application for Social Security Disability. Accustomed to looking on the bright side, it was unquestionably depressing to chronicle my symptoms and detail the things I can no longer do.

Support groups are a vital resource, although it took a while before I was ready to join one. This surprised me since, as a social worker, I'd participated in and led many support groups and knew the value they offered in terms of mutual support and exchange of knowledge. I tried several groups before finding the one that fit me best. We now not only attend a monthly support group, but are active in the local chapter of the National Parkinson Foundation (NPF). PSGUNY offers not only a variety of programs and services but more importantly a network of friends.

The other resource I've found particularly helpful, as have many others in the PD community (those with PD, their family and friends), is a book by Canadian author Gord Carley entitled Surviving Adversity: Living with Parkinson's Disease (Surviving Adversity, $15). Twenty-eight individuals with PD share their journeys in a way that clearly states, "We have Parkinson's disease but Parkinson's disease does not have us." I'm proud to be Chapter 7.

Advice? I have two suggestions. First, recognize when you need help and ask for it. Accepting help is not an admission of defeat but rather a sign of determination to remain as independent as possible. If having someone else carry your plate through the buffet line enables you to attend the wedding reception — go for it.

Your family and friends want to provide support so let them know what you need. Admittedly this is very hard to do. It requires conscious effort and the strength to remember that no one is completely independent anyway; we are all part of an interdependent web of life. Regardless of how much help we need to get through the day, we remain important and valuable persons. As a good friend of mine said, "We are human beings, not human doings."

Second, recognize that your family and friends are also affected by this disease. Remember you are care partners on this journey, providing one another with the love and unconditional acceptance we each need to face today with joy and tomorrow with hope.

Louise Powell Whitney, 61, lives with her husband Dennis in Penfield and edits the PSGUNY newsletter.