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Nichols: Coping with Parkinson’s involves love

POSTED: April 12, 2010 11:56 a.m.

On March 26, the U.S. Senate passed Senate Resolution 474 that designated April as a national Parkinson's Awareness Month. Our own Sen. Johnny Isakson sponsored the bill jointly with Sens. Mike Johanns, Debbie Stabenow and Mark Udall. It was thus a bipartisan effort of two Republicans and two Democrats.

This column is written because of that resolution.

About seven years ago at a practice session of the Believers Band at First United Methodist Church, my fingers refused to curve. They froze straight for a few moments. I had learned to play my saxophone beginning in the seventh grade and my fingers had never refused to curve to push the keys before.

I went to my doctor to see if something was wrong but my fingers did not freeze in his office. He told me that I might have simple old-age essential tremors. Both of my sisters had these symptoms, so I accepted the doctor's analysis.

But freezing straight is not the same as trembling, and these symptoms appeared to increase as we prepared to play for a church service down by the lake or a concert.

Parkinson's disease is difficult to diagnose because there is no definitive test that tells the physician that a person has the disease. After a year with no medication, I became a patient of an internist, Dr. Sean Sumner, who correctly diagnosed me and suggested I might want to consult Emory University doctors in their specialized Alzheimer's and Parkinson's clinic.

I was very lucky to meet Dr. Stewart Factor, who has been researching Parkinson's disease for well over a decade. The Michael J. Fox Foundation has supported several of the projects at the Emory clinic and I have been part of three of them.

At present, I am in a study named Honors. It involves more than 10,000 persons in several countries. I go the Emory Clinic once a year with my sister or daughter. I undergo over three hours of testing and my sister or daughter gives about a half-hour review of how I am living at home and coping or not with the challenges of Parkinson's.

My eyes were photographed as I looked at different images on a computer screen, but that is no longer part of the testing sequence. There are several tests for memory. A researcher reads me a story and then asks questions about specific details. I am read words and numbers to remember.

To my great surprise, I am growing more and more likely to forget words. However, I can remember numbers from three to four to five forward and backward. Six numbers are getting more difficult to remember.

Near the end of the session I meet with a social worker asks me how I am coping with the difficulty of Parkinson's disease problems. The day ends with a medical checkup with Dr. Factor.

I have signed legal papers to give my brain after I die to the Parkinson's Clinic at Emory. They will study sections of my brain and those of others with the disease, and compare with the brains of persons without the disease.

Nobody knows what causes Parkinson's or Alzheimer's to strike some members but seldom all members of a family. What are the possibilities of causes being linked to heredity, environment or chemicals?

I feel deeply honored to be a part of the Honors Research project. The researchers are watching me as the disease progresses and I get older.

I belong to a Parkinson's Support Group called the Lake Country Shakers. We meet at St. Paul Methodist Church on the first and third Thursday of every month. We support each other with love and concern. I attend as many meetings as possible and always learn something new at each session.

This group was formed back in 1995 by Marie and Bob Bridges and Louell and Ray Roper. Currently leading with the Ropers are Deane and Dave Poole.

Parkinson's is not a fatal disease like cancer. But it can make quality of life difficult. Buttoning clothing is not easy with fingers that shake. Keeping peas on a fork can be a challenge. We learn to laugh at ourselves and go on with the joy of living and contributing what we can.

In addition to Michael J. Fox, other famous persons with the disease have included Pope John Paul II, Mao Zedung and Muhammad Ali.

Tom Nichols is a retired college professor who lives in Gainesville. His column appears regularly on Mondays and on gainesvilletimes.com.



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