This Thursday will be a very special day for the Parkinson’s community: the debut of The Michael J. Fox show, a new TV comedy series starring the eponymous TV newscaster who lives with Parkinson’s disease. Michael has done so much to help this community — through the foundation he created, of course, but also by simply giving a “face” to Parkinson’s around the world. It is no exaggeration to say that he has transformed the way we look at PD and the people who live with it, and the level of urgency we all feel to bring resources to bear on ending it once and for all.
This event — which comes along 17 years after I joined the staff of the Parkinson’s Disease Foundation (PDF) — has prompted me to reflect on how our understanding of PD, especially because of the role of celebrities, has changed over the years.
Two months after I arrived at PDF, in an epic moment, the boxer Muhammad Ali — his Parkinson’s tremor publicly visible for the first time — struck the gong to open the 1996 Olympics. Over the next several years, Muhammad was joined by a series of other celebrities — among them, US Attorney General Janet Reno, Mike Fox himself, cycling star Davis Phinney, Pope John Paul II, and now Linda Ronstadt — who stepped forth, courageously and some of them at risk to their careers, to announce publicly their experience with a disease that had for almost two centuries been shrouded in shadows.
So how has our understanding of PD changed because of these brave witnesses to one of medicine’s most frustrating and complex enigmas? Here are three observations that I have made personally.
- First, as we have heard so often from our doctors, the Parkinson’s spectrum is one of the widest in medical science. From the age of onset (20s to 80s), to the range of symptoms (tremor, rigidity, fatigue and pain), to the ease or difficulty with which each person manages his or her disease, we have learned that the experiences among people with Parkinson’s range all over the map. Celebrities like Michael have communicated these varied experiences of Parkinson’s to the wider public. While we have come very far, we know we still have a long way to go in making Parkinson’s — including its pains and its potential treatments — a household word.
- Second, we have learned, to our disappointment, that identifying the secret of Parkinson’s disease and creating the medicines and surgical techniques that will control it better and with fewer side effects is turning out not to be a sprint, as many of us had hoped as recently as the late 1990s, but a marathon. Sadly, the past decade has been disappointing when it comes to new medications; out of more than 18 or so potential treatments tested in PD, only two have come to market. The good news, on the other hand, is that in that same decade, the basic science of understanding PD has thrived. And it is this basic science that will be serving as the platform for drug development in the next decade.
- And third, we see — in the stoic and heroic way in which celebs like Fox, Reno and Phinney play the cards they were dealt — that while people with Parkinson’s face inherent challenges, so many are using the experience of their disease as a means to help others. You see and hear this in the way our celebrity leaders raise awareness and funds for the disease. At PDF, we see this in the millions of folks around the country with whom we speak every day … in the way our 200-plus PDF Research Advocates work at the front lines with scientists in their quest for the cure … and in the work of the 350 artists who are active with the PDF Creativity and PD Project, and who use artwork as a means of coping. While the disease is a challenge, many have used it to help others. For the rest of us, the example they set is both inspiring and humbling.
So is TV ready for Parkinson’s? I have a hunch that thanks to these public figures and the everyday people who are busy raising awareness in their own communities, it is. We are at a place where the general public may be ready to welcome into their homes a TV character who — in both his real and his fictional life — lives with Parkinson’s disease.
What do readers think?