The world lost not only a comic genius and great actor with the death Robin Williams, but the Parkinson’s community lost one of our own—before even knowing he was a member of our community, as his widow only revealed after his suicide that he was in the early stages of the disease.
I wish I could have helped Williams. Here is what I would have told him.
When I was in my late teens, I noticed a tremor in my left foot. My feet dragged when I walked, my body became stiff, and my speech became broken. By my early twenties, I noticed my handwriting was much smaller and illegible, and my coordination was greatly diminished. When I walked, my upper body propelled forward so badly that I would run rather than walk. The tremor that began in my foot had had moved to my hands, and my arms would not swing when I walked.
At age 23—after seeing several neurologists, and six years since I first identified a problem—I was diagnosed with Parkinson’s disease (PD). It was devastating to be told I had an incurable, degenerative disorder, but I was thankful and relieved: I could have been battling an even worse condition, and knowing exactly what I was suffering from allowed me to accept it.
The brain remains a largely mysterious organ. In spite of years of good research and medical dedication we still don't know exactly what causes Parkinson's. (It's believed that to show symptoms of the illness, one must lose 80 percent of their dopamine receptors.) There's also no definitive test for it, only a battery of reactionary movements performed by the patient in the neurologist’s examination room. Parkinson’s afflicts roughly six million people worldwide, each of us differently. Some of the most common symptoms, though, are a resting tremor, depression, balance issues, stiffness, gait problems, and possible cognitive impairment. Among the first common symptoms can be a loss of a sense of smell, constipation, or depression.
I am almost 48 now. I have heard neurologists and researchers speak about Parkinson’s disease being a “livable disease.” It has been for me, but it took nearly 30 years with Parkinson’s disease to fully accept the alterations and challenges that come with this disease. I now write and speak to support groups all over the country to tell them that Parkinson’s doesn’t mean the end. It may make you alter your life and make you re-prioritize your goals, but it doesn’t have to demolish you.
Patients aren't the only ones who need to be informed, though.
The general public is often unaware of the nuances and complexities that come with Parkinson’s. Some examples include: Facial masking (where facial expressions become hard to recognize), dystonia (where joints or limbs become frozen and difficult to move), and the voice may soften or become raspy and unintelligible.
The government could do more. Capitol Hill should increase Parkinson's research funds for the National Institutes of Health (NIH), National Institute for Neurological Diseases and Stroke (NINDS), and researchers around the globe.
Even doctors sometimes fall short. When they simply tell patients they have a chronic, progressive, degenerative illness, with no cure, doctors are only programming us for decline. Patients deserve more hope and encouragement.
I never met Robin Williams and I would never speculate about what he was experiencing. I do find it terribly ironic that he portrayed Dr. Oliver Sacks in the film Awakenings, the story of the monumental discovery of Levodopa, the gold standard medication, still used by PD patients over 50 years later.
I also would never pretend that living with a neurological disorder is easy. There are many prominent examples of people living well with the disease, like actor Michael J. Fox, heavyweight boxing champion Muhammad Ali, and Olympic cyclist Davis Phinney. We will never know what kind of contribution Williams could have made in raising awareness about Parkinson’s, and that may be the greatest loss of all.
Karl Robb is the author of A Soft Voice In A Noisy World: A Guide To Dealing and Healing with Parkinson’s Disease. His blogs at A Soft Voice In A Noisy World and tweets@asoftvoicepd.