Listening today to the wonderful tributes to Mohammed Ali, we’re told that Parkinson’s medications work for a time and then don’t. Press reports abound with sad descriptions and depictions of Parkinson’s disease, especially using the three negative D’s of Parkinson’s disease reporting — devastating, debilitating, and degenerative.
Actually, Mohammed Ali showed us that life is not over with a diagnosis of Parkinson’s. It was among his greatest gifts. Yes, it’s no picnic. I know from personal experience. But everyday we learn more about PD. In particular, we now know that exercise of the right type can do as much good to stave off motor and nonmotor symptoms as most medications.
Doctors, scientists and patients know that tremor, freezing, slowness, imbalance, fatigue, and cognitive deficit, among the common signs of PD, are often accompanied by nonmotor symptoms. The good news is that it’s possible to essentially beat back many of these symptoms in a whack-a-mole fashion with the help of exercise, speech therapy, attention to and treatment of digestive issues and sleep problems, massage, meditation and a host of other programs and daily activities. The enemies of Parkinson’s are stillness, sitting, refusing to socialize and embarrassment.
Parkinson’s is difficult to diagnose and many doctors prefer to be as sure as possible before giving a patient such news. Yet, the time between noticing symptoms and diagnosis can be extremely difficult. Doctors know the world sees PD as “devastating” and “debilitating” – a visible sign of imperfection – a harbinger of dark things to come. By using such words and fostering such images, we frighten people who are diagnosed with Parkinson’s when we now have so many ways to reassure them. We contribute to the slowness of diagnosis and leave many patients who don’t see specialists barely functioning for too long.
People recently diagnosed call me regularly – referred by mutual friends. They worry about telling their bosses, employees, children and family. They know that the words “devastating,“debilitating” and “degenerative” are stuck to Parkinson’s disease. It’s time to release PD from those words, to treat it as the significant challenge it is, but to let future patients know that life after PD is different, difficult, but sometimes beautiful as well. I would not have become a painter without PD — perhaps not a novelist. The many wonderful people I’ve met with the disease would not be in my life. Sure, I might have done more of a different type, but the point is that when you have PD life does indeed go on.