Parkinson’s group forms in Key West

Question:

What do former attorney general Janet Reno, retired boxer Muhammad Ali, actor Michael J. Fox and retired Key West psychiatrist William Hawthorne have in common?

Answer:

All are among the approximately 1 million Americans living with Parkinson’s Disease, a progressive, neurodegenerative disorder that affects movement, muscle control, and balance as well as numerous other functions. One of a group of conditions known as motor systems disorders, Parkinson’s is the second most common nerve degenerative disorder after Alzheimer’s Disease.

In spite of the large number of people affected by Parkinson’s, much about the disease is still unknown. There is no cure and not even any known way to slow its progress. Nor is there any test which can bring a certain diagnosis in the early stages. There are medicines which can control symptoms for a while, but these are likely to lose effectiveness over time and may cause unwanted side effects.

William Hawthorne is a trained physician, but, as often happens, he did not recognize his symptoms as indicating Parkinson’s until they had been evident for more than a year and he had seen more than one doctor to try to determine what was happening to him.

Finally, visiting a new doctor, he received the diagnosis of Parkinson’s. At that moment in Dr. Jerry Jackson’s office he resolved to learn as much as he could about his illness and to take any steps that might slow its progress.

In his own practice, Hawthorne had had extensive experience working with groups and had seen some of the benefits that belonging to a support group could offer. So, within days of receiving his diagnosis, Hawthorne was actively seeking a Parkinson’s support group that he might join.

To his surprise he quickly learned there was none. There were, however, other Parkinson’s patients in the area who had expressed interest in forming a group, and one of them, Glenn Curry, called Hawthorne to see if he would be interested in helping with efforts to get a group started. Curry’s brother, who lives in Wellington, Fla, was diagnosed with Parkinson’s more than 20 years ago, and he has found great benefits in a support group sponsored by that municipality,

A third individual, a care giver for a Parkinson’s patient, had also felt the lack of a local support group and had been advertising in local newspapers, inviting interested individuals to call him.

Hawthorne and Curry contacted the third individual and arranged to meet for a lunch where they discussed what a support group might do and how it could be helpful for both patients and care givers. They agreed that meetings should be kept informal as a place for patients to share experiences, reactions and feelings. Recognizing that future group members would very likely have other ideas about the kind of organization they wanted, the initial group simply set a time and place for regular get togethers. They publicized these in newspaper listings, through paid advertising and by distributing flyers.

The group gathers at Camille’s Restaurant at 12:30 p,m. on the first Tuesday of every month. Meetings are informal, and, except for lunch, at no cost. All are invited, and there is no need for any sort of reservation. As more people become aware of the group, attendance is growing.

For more information, call Bill at 305-296-9814 or Glenn at 305-296-5084.

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