My battle with Parkinson’s shows why federal funding for research matters

My battle with Parkinson’s shows why federal funding for research matters
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Three and a half years ago, I was diagnosed with early stages of Parkinson’s disease. I was stunned. I always thought of myself as being indestructible; I prided myself in never having missed a day of work. In fact, I was in total denial when I first started experiencing some of the symptoms — shaky hands, loss of balance — and only because my family and closest friends urged me, I got tested.

My second reaction was to be scared. My mother had Parkinson’s disease, a neurodegenerative disorder that affects dopamine-producing neurons in the brain, for the last 13 years of her life. It is a progressive disease for which there is no cure, and its complications can be serious; my mother was confined to a wheelchair less than a year after her diagnosis. Like all of us, I had seen complications from Parkinson’s ultimately kill Muhammed Ali and seriously affect mobility for Michael J. Fox.

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But I was lucky. My daughter-in-law’s mom, Mary Naeve, is a certified nurse practitioner and she had gone to a doctor at the University of Pennsylvania, Dr. Matthew Stern, whom she said was terrific. I asked my family physician, Dr. Geno Merli at Jefferson University Hospital, about him and he told me that Dr. Stern is as good as it gets.

 

Fast-forward to the present. The treatment prescribed by Dr. Stern involves a significant amount of medicine and physical therapy, and I can’t overstate the benefits of the physical therapy. I go to a special physical therapist who puts me through a rigorous one-hour-a-week workout, which includes balance and step exercises and 30 minutes of intense boxing that is useful for controlling balance and reflexes.

The good news is, this treatment regimen has worked beyond my wildest hopes and expectations. The onset of my disease seems to be totally stabilized; I haven’t regressed a bit. In fact, in some ways, I seem to have improved because of the balance work. For example, my refrigerator takes ice trays and I can fill four ice trays with water and transport them from the sink to the freezer without spilling a drop.

So, this week I ceded to my doctors’ long-standing request that I go public with my affliction. I had waited because I wanted to be sure that the treatment regimen would work to produce significant benefits for me before trying to sell it to others. But I decided the possible benefit to others was great enough to admit publicly that I have this serious disease.

My hope is that I can motivate people who may be experiencing some of the early symptoms to see their doctor and be routed to a specialist who can prescribe treatment early enough to slow — or stop — the progression of the disease. The message is, Parkinson’s disease is not a death sentence and it doesn’t have to impact the quality of your life.

I still undertake an extraordinarily busy schedule. In fact, this May my schedule had me out of Philadelphia for 15 of the 31 days. I realize that when most people hear of Parkinson’s disease they think of Ali or Fox, but those difficult outcomes don’t have to happen if you can get a good treatment regimen early on. And please note that none of the medicines or physical therapy I have been receiving is anything special. Anyone with a health insurance plan will find that both are covered.

Ironically, about two years ago, I held a fundraiser with my friend Richard Vague for the Abramson Cancer Center at Penn. A number of doctors spoke at the event, including one who mentioned that with all of the research being undertaken at Penn to combat cancer, they also are doing some cutting-edge research to find ways to combat three neurological diseases: Parkinson’s, ALS and Alzheimer’s.

So, there is a second, equally important message here, directed at Congress and at President TrumpDonald John TrumpTrump: I hope voters pay attention to Dem tactics amid Kavanaugh fight South Korea leader: North Korea agrees to take steps toward denuclearization Graham calls handling of Kavanaugh allegations 'a drive-by shooting' MORE: please fund National Institutes of Health research. It can be a matter of life and death for millions of Americans.

Edward G. Rendell was the 45th governor of Pennsylvania. He is a former mayor of Philadelphia and former district attorney in that city. He served as chairman of the Democratic National Committee during the 2000 presidential election. He is now co-chairman of the Immigration Task Force at the Bipartisan Policy Center.