For more than a century and a half after Dr. James Parkinson’s original description, Parkinson Disease was a “faceless” disease, while other devastating diseases were popularized when famous figures contracted them.  For instance, Polio, common in the first half of the 20th century, afflicted President Franklin Roosevelt and other well-known public figures.  Amyotrophic Lateral Sclerosis, a relatively rare disease, became known to the world after being contracted by Lou Gehrig, the famous baseball player.  Humanizing these diseases helped with fundraising at the grass roots level as well as at the National (NIH) level.  While Jerry Lewis did not have Muscular Dystrophy himself, his dedication to fundraising for this condition had a huge impact for many years.  There is no doubt that being able to associate a well-know face with a disease, either a sufferer or a champion, is helpful in kindling research interest and funding.  Parkinson Disease had no such “face” until recently, despite being relatively common. 

Today, however, most people in the U.S. have heard of Parkinson Disease due to the very open public appearances of popular figures such as Michael J. Fox and Muhammad Ali. PD has a “face”, now.  And that face has been responsible for dramatically increased research and program funding at both the academic level and from pharmaceutical companies.  As a neurologist who specializes in PD, I can’t tell you when we will finally discover the cure for PD.  But what I can tell you is that over the last 30 years or so we have gained a tremendous amount of knowledge about Parkinson Disease.  Just as PD has been given a “face” for the public to appreciate, it has also been given a “body” for physicians.  We now know that PD is terribly complicated, as is the PD patient.  It turns out that the whole brain is affected by PD, not just the Substantia Nigra.  And it affects not just the brain, but also the stomach, the colon, the heart, the blood vessels, the skin and other organs.  PD affects not just movement, but thought processes, memory, self-confidence, relationships, mood, motivation.  Whereas scientists used to think it was only rarely genetic, we now know that perhaps 8% or more of cases have some genetic component.  Further, we have identified potential harbingers of PD that may precede the motor symptoms by 10-20 years, such as loss of sense of smell, sleep disorders, and constipation.  Vigorous exercise and rehabilitation therapy, previously only a “suggestion” for PD patients, has been shown in several well-done studies to have significant benefits specifically for people with PD.  New therapies such as longer-acting medications and a form of intestinal gel are likely to be approved early in 2014.  A once-a-day patch for PD was released last year.  Gene therapies and stem cell therapies, while still far off from FDA approval, are being vigorously investigated.

Without the “face” of PD provided by Muhammad Ali and Michael J. Fox, both sufferers as well as champions of PD, I have no doubt that the “body” of research into a cure and further treatments for PD would be far behind where it is today.

I would like to applaud the brave members of the PD community here in Sarasota who have allowed Neuro Challenge Foundation to tell their stories and use their photographs to “get the word out” about all of the high-quality and innovative programs that we have pioneered over the years.  While I am very encouraged at how much Parkinson Disease seems to be recently holding the attention of the nation, thanks in large part to Mr. Fox’s return to television, I feel the need to point out that NCF has been doing a fantastic job of “Thinking Globally, Acting Locally” for years now.  We take as a measure of our success that quite a few other organizations have copied our programs.  We have robust programs that help our patients and their families with a more palpable, realistic and helpful approach than ever before.  And we could not have done all of this without people like Wendy Tilles, Jeff Torborg, Dick Williams, Michael Gilkey, Dr. Bernie Feinberg, and many, many others who have opened up their lives to us so that we could put a local “face” on Parkinson Disease.

For more Parkinson’s answers and information, visit:

Dr. Sutherland’s website:

Dr. Sutherland’s facebook:

Dr. Sutherland’s blog: OR

This article appears in the Neuro Challenge 2013-14 Annual Guide to Services.


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