Editorial

By Marge Moylan

HAPPY 15TH ANNIVERSARY!

Can you believe it? The Central NY Parkinson's Support Group is 15 years old as of this month. When this group was formed back in 1992, I doubt that any of us saw ourselves still doing this 15 years down the road. The optimists among us probably held out hope for a cure before 15 years had gone by. The pessimists, on the other hand, probably thought there was no way they would be here that long. Surely the disease (or the care giving) would have them six feet under before 15 years elapsed. Of course, I

exaggerate on both counts. Actually, I don't think anyone was looking too far ahead.

We had found what we needed right then and there: SUPPORT. We had the support of talking with others in the same situation as we were in. There was the support of being able to explain your problems to people who would listen and understand because they had confronted the same difficulties. Often they would also have answers, tips, and hints for making life a bit easier. Then there was the chance to talk about the things we feared in facing PD. Fears aren't nearly so frightening when brought out from hiding where they can be doused with bright light. And perhaps more than anything else is the support that comes

when you realize that you are NOT alone in this battle with PD. You have a whole army on your side.

15 years and there are still quite a few of us who were there from the onset, an interest meeting held at St. Luke's Hospital in Utica in November of 1991. It was a speaker on the topic of Parkinson's disease from Emery University in Atlanta. It had been set up by a drug rep through coordinator of the 55 or Better Program, Pat Roswig. Pat had no idea of the size crowd to expect, but I think everyone was amazed when all seats were taken and people had to be turned away at the door. There in that room that night was the proof that you never have to be alone with PD.

From that informational session in November the support group came into being in the hands of the founders: Gordon Jeffery of Clinton, Clayton and Elizabeth

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Brewer of New Hartford, and Pastor Carl Johnson, at that time the minister of the First United Methodist Church in New Hartford, where CNYPSG had its first meeting and has been meeting ever since.

I am going to throw out a challenge to you, our readers. I am looking for stories about CNYPSG. They can be true stories, funny stories, or just your impressions of the group. They can be in any format you choose: fiction, nonfiction, poem, song, whatever you can set down in words. I will print as many as I can in the newsletters for the rest of this year. Call Marge Moylan at 315-867-5770 if you have questions or if you want to tell me the story rather than writing it out. Or send your written version to the mailing address or the e-mail address on the front page of this newsletter.

Come on! Grab a pen and pad, use your imagination, and enter into the No Parkin' Zone. Tell us a story.

Brunch Bunch On Hold

Brunch Bunch activities have been terminated due to lack of interest. This once popular and well attended activity for CNYPSG, seems to have run its course. The idea for having these Saturday lunch gatherings came from Nancy McCaffrey who planned the first one at the Rome Dennys. For a number of years these were always a success attracting a crowd of 25 to 30. We tried to vary the location, choosing restaurants in Utica, Boonville, Little Falls, among others. One of the most popular locations was the Franklin Hotel in Rome. We had a number of reasons for promoting these outings. First, people who shake or have bad dyskinesias, don't feel so self-conscious if there is a whole group of shakers. Second, it is good for all of us to get out to socialize once in a while. The third reason is that while most of us are retired, we have some members who are still working during the day and cannot attend our meetings. When the group started, we met twice a month, once in the afternoon and once in the evening. But after a while, that got to be too much for many of us so we cut back to one meeting per month. Since the evening meetings drew a much smaller crowd than the day time ones, we dropped the night meetings. But this cut off the opportunity for the young onset members and working spouses to be a part of the group. The brunches gave back that chance to interact with other PWPs and caregivers to some folks. But attendance has fallen off, and Nancy has had to call people to see if they are coming. Our last one, which was to be at the Franklin Hotel, had to be canceled entirely because we had only 6 reservations. If there is anyone among our readers who wants to try heading up a brunch bunch type activity, speak to someone on the board. Give it a whirl if you want. They do not have to be Saturdays or lunches. There was one where we went to Piggy Pats in Middleville for dinner on a Friday night. And Sundays are another possibility. Maybe the Brunch Bunch has outlived its purpose. Maybe there is some other kind of activity we could try. It has been a long time since we had a dinner dance or a theater outing. Anyone who would like to volunteer to head up a social committee and plan something fun, SPEAK UP. WE WOULD LOVE TO HEAR FROM YOU.