John Ball's Speech from the San Francisco Marathon 2007 Carbo Dinner - 08/23/2007

When you have a problem, it’s best to be part of the solution.

Many of you know that I was planning to run the marathon this weekend, but my training was interrupted by a torn cartilage in my left knee. So, I’ll be walking the 5K tomorrow instead of running 26.2 miles. Am I disappointed? Not really, because I know that this is just a temporary setback, and it gives me a chance to see Team Parkinson at work from a different perspective. I made a couple of visits to two orthopedic doctors and came away with two different alternatives. The first doctor confirmed the tear in the meniscus and offered me a cortisone shot under the kneecap to relieve the pain. Then he recommended arthroscopic surgery to remove the damaged piece. He also said that if I was going to take the shot and then run the marathon anyway, he would withhold the shot. So I promised not to run the marathon.

The second doctor confirmed the tear in the meniscus, but suggested that since the cortisone had done a good job relieving the pain, I should be free to resume training and return to my normal level of activity. “The body,” he said, “often finds a way to adapt to wear and tear. If the tear later becomes a problem again, then we do an MRI, and then possibly arthroscopic surgery.” Not a significant difference in the two strategies, perhaps, but you can guess which one I chose to follow. For me, the path of least resistance is the one that allows me to choose the direction and the outcome, rather than accept a course chosen by others. I believe that this habit has been one of the reasons I been able to live with Parkinson’s disease for over 30 years and remain fully engaged with work, hobbies and family life.

There are many different ways to take control of a problem, but one such as a chronic, degenerative disease like Parkinson’s demands a comprehensive long-term strategy - one that makes use of all the available resources to achieve a balance between expectations and acceptance of limitations. My expectations have always been set pretty high, but my limitations are becoming more and more visible…so how does one keep them in balance?

My first suggestion would be to listen to your body, and learn to hear what it’s trying to tell you. It speaks the language of pleasure and pain and although it’s the body’s native tongue, I think we are trained to forget it or ignore it for the most part by our cultural experience. We are encouraged to bury or subordinate our pleasure and ignore or overcome our pain. In doing so we can live up to that Protestant ideal of sacrifice and avoid the deadly sin of self-indulgence. But the language of pleasure and pain has a complicated syntax. For example, the pleasure of achievement, such as finishing a marathon, can’t be reached without the pain of enduring long training runs and minor injuries, and yet, to train through a serious injury like a torn cartilage is foolish and results in more long-term pain, and less achievement in the end. So we must learn to listen to our own body language, and understand or interpret its subtle messages. That is a difficult task for most of us, and certainly not made any easier by Parkinson’s.

Second - we must listen to others. When I have an injury or a symptom I can’t figure out on my own, I go to my doctor, or to my family, or to my training partners, or to my PD network on the web for help and assistance. I go to them for help, but I retain the responsibility for my own decision-making. I saw two orthopedic doctors and was given two alternative courses of action. I also listened to my training partners, one of whom has just gone through arthroscopic surgery on his own knee. And I listened to my wife and my friends, but in the end I must make my own call. A doctor once asked me “Why do you bother seeing a doctor if you’re just going to do what you want to do anyway?” My answer was, “Well, I was waiting to hear if you had a better alternative, something I hadn’t thought of.”

I may be just delaying the inevitable surgery suggested by the first doctor, but at least I will have tried the least invasive strategy first, and the second, and so on. I’ll take that chance because the short term gains are worth it. Those short-term gains from returning to my normal activity include the feelings of fitness and strength and the mental health that goes with them.

But Parkinson’s - as I said earlier - demands a long-term strategy to achieve long-term goals. There’s no quick-fix like a cortisone shot, nor any short cut to a cure… We must be willing to do the hard work required to understand the language of this complicated disease. We need to recruit and educate new scientists and empower physicians to try new ideas for treatment. We in the patient community cannot sit here - patiently expecting a cure. We need to take an active role in driving toward a solution to our own problem. We need to make our faces visible to society around us, even if they wear the mask of Parkinson’s. We must be willing, like Michael Fox was last fall, to put our dyskinetic bodies on the line, to ask for help in driving this disease out of existence. We must advocate for ourselves, even if it sounds selfish or self-serving, because if we don’t, nothing will ever change. Money will continue to flow to the current war or the impending crisis, or the next disaster...

But when we win, when we achieve our goal and find a cure, it will not be self-serving…it will be serving our children and their children and all mankind.

So tomorrow, as you run or walk, think about how you can take control of your own situation. Clarify your long-term strategy, and put your long-term goals in bold letters for all to see and understand. And then live it to the max.

Have a great race tomorrow.