Commentary: When celebrities with Parkinson’s come forward it raises awareness

I recently found myself saying, “Finally.”

I said this to others. I said it to myself. And many said it to me. When actor Alan Alda revealed that he was diagnosed with Parkinson’s disease, the Parkinson’s community let out a collective, “Finally.”

To have an actor of such vigor, energy and zest for life reveal that he not only has the disease, but that it has not slowed him down, was the shot in the arm this community needs. Everything about Alda’s story is what patients and their families need to hear.

Alda, 82, is still working, still active. He listened to his body when hints of symptoms creeped up, and he sought the kind of early intervention that can greatly slow the progression of the disease.

This is the way it should be. Nobody wants to be told they have an illness, but with Parkinson’s we can change the course of the disease through appropriate interventions. Alda’s public announcement sheds a much-needed light on the possibilities that exist for people living with Parkinson’s.

The most well-known surgical intervention is deep brain stimulation, in which electrodes are implanted in the brain to regulate abnormal activity. At Pickup Family Neurosciences Institute at Hoag, we have also been treating patients with the Duopa Dopamine pump, which allows us to control and fine-tune medication to the tiniest milligram to get the best therapy possible. Many other treatments are on the horizon.

The earlier the diagnosis, the better the outcome. The challenge with Parkinson’s is that the early symptoms are not the ones most of us associate with the disease. While most people know about tremors and a shuffling gait, early symptoms can include sleep disturbances, constipation and loss of smell — hardly issues that make you run to a neurologist.

What is so unique about Alda’s case is that he researched his sleep disturbances and sought appropriate medical advice. When he received his diagnosis, he experienced the same shock and sadness that many of my patients go through, but he quickly pushed through it to take control of his disease.

“In the very beginning, to be immobilized by fear and think the worst thing has happened to you — it hasn’t happened to you. You still have things you can do,” Alda told CBS News. “I’m taking boxing lessons three times a week. I do singles tennis a couple of times a week. I march to sousa music because marching to music is good for Parkinson’s.”

Alda is not the first celebrity to come forward. Michael J. Fox revealed his diagnosis in 1998, famously lobbying Congress and establishing the Michael J. Fox Foundation to fund research. Muhammad Ali was diagnosed in 1984 and carried the Olympic torch in 1996. The Muhammad Ali Parkinson Center in Arizona treats people with the disease.

What resonates with me about Alda’s announcement is his positive outlook and his timing: there are so many promising interventions on the horizon. More than 20 clinical trials are going on right now for viable treatments, and several companies are working on vaccines.

This makes his upbeat and motivating revelation such a gift to others with the disease. Alda’s courageous words validate what we tell patients about the rich life they can live with Parkinson’s. It reminds friends and families that Parkinson’s is not fatal. And it provides hope and a greater understanding of how well this disease can be managed.

Finally.

Dr. Sandeep Thakkar is a movement disorders specialist at the Pickup Family Neurosciences Institute’s Parkinson’s and Movement Disorders Program at Hoag.