Bret Parker, of Sag Harbor and New York City, is the executive director of the New York City Bar Association and a member of the Patient Council of the Michael J. Fox Foundation for Parkinson’s Research. He joined a delegation of Parkinson’s disease suffers, who traveled to Washington, D.C., this week to meet with lawmakers to discuss the need for more federal funding for research into a cure for the disease as well as support for those living with it.
When were you diagnosed with Parkinson’s and what was your initial reaction to that diagnosis and how have you managed your symptoms?
I was diagnosed 11 years ago at age 38, and it completely shocked me. For five years, I kept it mostly secret, but as my symptoms progressed I knew that speaking with others and sharing my story would raise awareness and also help the search for a cure. That’s when I told everyone and became a vocal advocate.
In the intervening years, how well have you been able to manage your symptoms?
My symptoms are sometimes very mild and at those moments it’s hard to even tell I have Parkinson’s. Other times, they are much more obvious — a tremor in my right hand, stiffness and rigidity in my right arm/leg. It can look like a limp, and it sometimes feels like I’m walking through quicksand. There are also non-motor symptoms such as fatigue, sleeplessness, diminished sense of smell, memory loss and other issues. I manage them well enough that I’m living an active lifestyle and working at a busy job as executive director of the New York City Bar Association, but I have to listen to my body and take it easy sometimes.
Michael J. Fox helped boost awareness of Parkinson’s disease when he created his foundation. What are you asking the federal government to do?
We need Congress to support funding for the National Neurological Conditions Surveillance System and federal agencies that further Parkinson’s research. The system will provide scientists with the comprehensive data to refine and target their research, which could lead to better knowledge of complex neurological diseases, new treatments and a cure. In addition to the surveillance system, funding for the agencies that conduct medical research must remain a top federal priority. Funding for the Department of Defense Parkinson’s Research Program has decreased in recent years and should be restored. In addition, The National Institutes of Health (NIH) work is vital to the development of treatments to slow or stop the progression of the disease.
Are there any advances you are particularly excited about or any setbacks you are particularly concerned about?
There are some exciting new developments. For example, one drug that I take to manage my symptoms wasn’t even on the market a few years ago. There are other drugs in the advanced stages of development and testing that show promise. On the other hand, the main drug that people use, levodopa, is the same drug people have been using for decades — we still have a way to go to find more effective treatments and a cure. There are various paths being investigated, but it doesn’t feel like there’s a “eureka” discovery on the immediate horizon that will cure the disease of even stop the progression of the disease.
You and other advocates will receive two days of training before you sit down with members of Congress. What do you hope to impress upon them?
Our goal is to raise awareness about Parkinson’s disease and educate members of Congress on the role they can play to help find better treatments and a cure for the disease. The number of people with Parkinson’s in the world has doubled since 1990 and will double again by 2040, to nearly 13 million. This disease is essentially a pandemic and costs our country almost $26 billion per year. Currently there is no cure for Parkinson’s disease and we urgently need one.
As someone living with Parkinson’s, you are developing a reputation for tackling some pretty extreme physical challenges, most recently the World Marathon Challenge, in which you and about 50 other athletes completed seven marathons on seven different continents in seven days. Why do you do it?
Since I’m not a doctor or scientist, I can’t find the cure myself, but I can raise money for research and awareness, so people understand the disease better. By doing events for the Michael J. Fox Foundation, over the past five years, I’ve raised approximately $600,000. And I’ve also been able to send the message that you can do your best to live as full a life as possible even with Parkinson’s.