January 17, 2011

5. My Parkinson's support group and online support networks give me a community for sharing experience, strength, and hope … and laughs.

charter maldriverna

When I was dealing with getting sober and coming out into the gay world, becoming involved with others who shared these concerns was one of the things that enriched my life. The feeling of belonging to a community is recognized by medical authorities as a key to mental health.

Because of these experiences with alcoholism and coming out, I early on sought a PD support group. Finding one was easy. The Parkinson's Foundation sponsors groups all over the country. By just putting "parkinson's support group dc" into the Google search box, I quickly found one that's just a 10-minute drive from my house. (You also could log in to the Parkinson's Foundation's website and find local groups.)

When I told a friend that I had joined a Parkinson's support group and many of its members were much further down the road of Parkinson's progression, he asked: "Isn't that depressing?" I replied that it actually was reassuring and inspiring. Our leader was diagnosed with Parkinson's in 1987 at age 43, yet today -- 23 years later -- he's a high-functioning person with PD. Others in the group are not functioning as well, but one member in the later stages of the progression.is probably the most inspiring. Even though he needs a walker and a caregiver to get to the meetings, he's one of the most faithful in attending. He shows the determination to keep on fighting that marks just about every member of the group. A robust sense of humor about the problems of living with PD also is shared.

When I joined this support group, I thought we'd meet each week to exchange information on what works in dealing with the physical aspects of the disease. But I soon realized that the moderator was determined to keep us focused on sharing the emotional turmoil. This makes sense. The other stuff you can get from your doctor, books, online, and elsewhere. The emotions and feelings can best be addressed face to face. New friendships are sprouting from the group, just as happened when I was dealing with my alcoholism and sexual orientation

Online support groups also are readily available. If you go to groups.yahoo.com, and put "Parkinson's" in the search box, you'll find many groups listed. I've joined two:
• plwp2 -- People Living With Parkinson's
• pcsg -- Parkinson's Caregivers Support Group

(BTW, when I join any group, I select daily e-mails so that I'm not bombarded with e-mail interruptions during the day.)

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