The War On Parkinson's Disease

Ronald Reagan and his ever-supportive wife Nancy fought the "War on Drugs", George W. fought the "War on Terrorism" and I am fighting the War on Parkinson's Disease today.



Their wars were not very successful. Misguided, misinformed, nearly naive, they lost their battles if not nearly every one, and as usual with politics, their Wars turned out to be mostly words. Just words, and as much as I love words, I see how words can be wasted and ineffective, too.



Some days its an effort just to stand up, take my meds, get to the shower, get dressed, and get to work on time. My first group on Tues and Thurs mornings is demanding, and they become annoyed with me if I am late. Their teacher is inflexible about their schedule, and I try hard to make it to see them at their scheduled time. Half of the time I am successful. The other times I do my best to reschedule. There are mornings when I feel like I am unable to move fast enough, and the rest of the world does not understand. In fact, the world is arrogant enough to not feel they need to understand. If you can't take the heat, stay out of the kitchen. There are days when I want to stay out of the kitchen but I have people relying on me. When its kids, you do your best.



Fighting this war makes me strong psychically but not so strong physically. Fighting against gravity feels like the "digging deep" I used to practice on a regular basis when involved in individual or team sports. It's a bit like the feeling you get when you can't yet see the finish line but you know it's another half mile, or heading up the hill on your bike, or finishing the last touch on the ball before passing it off to a teammate. You somehow find it in yourself to do the thing you think you cannot do. If you push it, you get stronger for the next challenge, but some days it feels as though"pushing it" is something you are incapable of. And there are days when no one quite understands it. So you find your support network, those people who would be there for you no matter what war you fight or how well you fight it. And you learn to seek comfort, through conversation, writing, touch, food, deep breathing, whatever it takes to fight the battle. You read and research and inform yourself so you become a better patient. You win this battle and the next one by taking each day as it comes and eventually, you look back and see you have indeed, for all intents and purposes, won the war.

I presented this idea and some others to a group of other Parkinson's patients at a support group in a hospital last month. One very dyskenetic man, about my age, who had had DBS, had his wife sitting at his side, knitting calmly. He challenged me again and again about my opinions. I reminded the group how important it is to do some kind of purposeful work in their community to keep from feeling useless and depressed. He said,



"that works for you. For others of us, we CAN'T".



Now, you will find me a very compassionate person. However, I do not ever accept "CAN'T" from anyone: not my students, nor the children I used to coach, nor my own two daughters. I let him protest, his wife listening, and then I answered, "I am not telling you HOW to make a difference, that is up to you. But pushing yourself is good for you and your Parkinson's."



He later found me and told me privately that I had hit a nerve, that he was sorry for his anger. I said quietly back, " I understand. I have PD too. "



I have been invited by the Swedish DBS team to continue my work with this support group. It will mean some re-scheduling and it will be exhausting, but the War on Parkinson's Disease is fought in the trenches, in our homes, in our workplaces. It's fought in ways we cannot even see, when we serve as models in our communities, which we can do. Its fought in brushing our teeth and flossing; in keeping our medications in order, in walking the dogs or sticking with a hobby even when we are exhausted from life.



Fight the good fight, and we will win our own War.



As Eleanor Roosevelt once said, "We gain strength, and courage, and confidence in each experience in which we really stop and look fear in the face...we must do what we think we cannot." and:



"When you cease to make a contribution, you begin to die."