Thursday, March 06, 2008

"Living With Parkinson's Disease"

Playwright Dina Harris, who lives on Cape Cod, has had Parkinson's Disease for the last 11 years. Her treatment regimen? Medication, but also, daily exercises following in the tradition of Tai Chi. She practices the ancient form itself, but also does meditation walks and other exercises rooted in Tai Chi. Whenever she moves, she “negotiates” or talks to her brain. She has an amazing technique for “kickstarting” her brain by talking it through the tough moments when she can’t move the way she wants to, say through a doorway.

Read this extraordinary piece by a woman with courage and great creativity. Dina looks forward to sharing more of her experiences with others who have PD, but who might not be aware of how much they can do to improve their quality of life. —

“Talking to Your Brain”

By Dina Harris

To start, here is my very simplified definition of Parkinson’s Disease. It is a disease of the brain, in which the loss of the neurotransmitter dopamine affects how you move and how you feel. The disease is progressive and there is no cure. Yet!

If you are a person with PD or a caregiver or friend of someone who has it, before you start looking up some very scary things that might happen to you, remind yourself that no one knows exactly how your disease will progress. Why? Because even though we all have many of the same basic symptoms, each of us has our own personal supply of dopamine in our brain and our own reactions to the PD medications and treatments. Also, the diagnosis for PD is still a “clinical” one. There are no tests. You need to find a neurologist who is a “movement disorder specialist.”

I was diagnosed in 1997, the year my son got married in New York and my niece wed her long-time guy in California. I remember it this way, because that year gave me the bitter along with the sweet. My initial reactions to the suggestion by two neurologists I first saw –that I could have PD– were a disaster. The nicer one wondered if it was PD or anxiety. The other dismissed me after ten minutes of giving notes to his sleep-deprived resident, never once looking at me. He offered up a medicine, whose efficacy and side effects, he said, “I could look up on the Web.”

He added, speaking over his shoulder, that I could take the medicine “if I wanted a better quality of life.” It was my choice. Then he was out the door. Something was happening with my brain, but I hadn’t lost my mind. I certainly was not going to do anything this creep had thrown my way. I was so filled with anguish and despair that I simply chose not to think about it for months.

I knew what I could do and what I couldn’t do: I could not walk heel-toe. I shuffled along with my arms hanging stiffly at my sides instead of swinging automatically. I never had any shaking or tremors. (I later learned that many of us do not.) What I felt was that if I let myself tap into all the happy excitement of my son’s up-and-coming wedding, I would be able to be part of the wedding party, get up to dance the Hora, and would look gorgeous in the wedding photos. I did. I did. I did!

After the wedding, I went to see an amazing neurologist, Dr. Lucien Cote at Columbia Presbyterian in New York. “You are so lucky that it is Parkinson’s,” Dr. Cote said to me at that first visit, “because there is so much we can do for you!” This extraordinary man examined — but also talked to me– for two hours, explaining what was happening to me at that moment, what we could do for my care, and answered all of my questions. I had never before met a doctor who treated me with such compassion and respect. He prescribed 5 mg of Selegeline with breakfast, describing what the medicine does — and amazingly, told me to do Tai Chi at least three times a week. This, plus physical therapy, was my medical regimen for the first year of my PD.

Tai Chi is a brilliant choice, because with PD you have to talk to your brain all the time! Tai Chi trains you to do the same thing. With constant repetition and practice of the Tai Chi moves, what your body learns is then imprinted on your brain. At home or on a plane, on the street or in any public place, talking to my brain — sometimes combined with tricks I call “kick starts” — are what get me up and keep me moving. I look forward to sharing some of these “kick starts” with you in another post.

A few years ago, my husband and I left New York and moved to Cape Cod, where I started a PD support group that includes a 40-minute exercise segment. Being able to help others with what I have learned about living with PD, as Dr. Cote has helped me, has given me, in my sixth decade, the gift of growing as a human being. “…There is so much we can do for you,” the doctor said to me almost 11 years ago. It’s still true. Stay tuned for the next PD post and we’ll continue our adventure!

1 comment:

BobT said...

Hi Bob here diagnosed in 98 and now 50. With APDAMA support I am coordinating a PD golf fundraiser on sept 4 Id love you to play sponsor , pass the word or just visit. contactme at or visit