Parkinson's disease makes people uncomfortable - having it and seeing it. Oprah Winfrey helped alter that yesterday when she invited Dr. Mehmet Oz and Michael J. Fox onto her show. And the importance of that to millions of people who either have PD or love someone who does is inestimable.
We haven't come to the point where PD elicits more hope than fear but we're getting there. And as Dr. Oz pointed out during the show, fear is not conducive to recovery from any illness. Being positive is.
That's a tall order some days. In fact, Oprah started the show talking about how even the optimistic Michael J. Fox has both good days and bad. But a lot of what happens with PD, Dystonia and diseases like them depends on how the patients respond - whether they're able to laugh and enjoy life more often than not.
A couple of weeks ago my sixteen-year-old daughter and I were celebrating St. Patrick's Day. The waiter suddenly stopped telling us the specials. "You don't want to hear about the eggplant?" he said somewhat surprised. "I do. I like eggplant," I replied in puzzlement. "But you keep shaking your head 'no'," he told me. My daughter bent over laughing. "My mom does that all the time," she said. The waiter looked at me wondering why I'd go from restaurant to restaurant rejecting the specials. I told him I have PD and my head shakes. He felt awful. But we quickly cheered him up, explaining that he couldn't have known. That night, my daughter and I laughed a lot about all the things I could be saying no to and not realizing it. "Mom, should I try to get on the honor roll? No. OK." It was fun.
The important thing to come out of Oprah's show today is that while PD isn't usually fun, there is hope on the horizon. PD can now, due to advances in stem cell research, including with skin cells, join the diseases for which there is hope for cure. Before now that hope was too far off for most people with PD. Parkinson's is often described with words such as "devastating," "disfiguring," "degenerative," "desperate" and "incurable". It's now time to stop referring to PD in these ways and to look at it as just the opposite if we continue on the promising path we're on.
If I had more money, or influence, I'd put a lot of it into getting the word out about talented PD patients and how many are coping in very positive ways. That doesn't mean you don't cry or get angry now and then. As Michael J. Fox said, "This sucks." But I'd help PD patients feel more like post-initial-trauma breast cancer patients who are in a fight together. That kind of camaraderie is priceless.
A woman came up to me at the YMCA the other day and asked me to join a cancer support group because I've had breast cancer. In fact, she told me, there are two such groups at a single YMCA. I want that kind of outreach for PD patients who haven't had cancer. I want them to be able to talk to people about how they are that day and find understanding, sympathy if needed, and good cheer. Certainly good work is being done, but as hope becomes more closely allied with Parkinson's, more will be possible.
Once you get to know people with PD, you see that most are funny and talented like Michael J. Fox. PD brings out creativity in many people. The brain adjusts and new ways of expression emerge. It's time to celebrate how far we've come in the treatment of PD and its associated illnesses. It's time to give PD a makeover, so that as for many fighting cancer there are people out there with ribbons and upbeat attitudes helping patients feel better and more hopeful about PD and themselves.
Oprah helped move us in that direction. She helped reduce the fear by increasing hope and that is at least half the battle.
Dr. Reardon also blogs at bardscove.