A Caring Community

Parkinson’s Support Group Provides Resources for Community Members

You might not expect tai chi and boxing lessons to converge with medical advice.

However, when treating Parkinson’s — which can be difficult to diagnose and currently has no cure — education on new resources can make a world of difference.

The Parkinson’s Support Group of Southeast Missouri provides just that. Through meetings led by group coordinator Desma Reno, individuals with Parkinson’s can grow to a better understanding of how to handle a Parkinson’s diagnosis.

The group began in May 1994 when Reno worked with patients at Saint Francis Medical Center. As many individuals with Parkinson’s are treated at Washington University in St. Louis, Reno says patients were soon calling for a support group closer to home.

The Parkinson’s Support Group of Southeast Missouri was formed in connection with the American Parkinson’s Disease Association. It gives an open environment for participants to share their experiences and receive a “wealth of information,” group member Mary Ann Diggory says. Twelve individuals attended the first meeting, and the group has been growing ever since.

Six years after it was first formed, the group moved to their current location at Cape Girardeau Public Library, which Reno says was mainly due to the greater availability of handicap-accessible parking. Now, Reno says attendance is in the low to mid-twenties.

At meetings, caregivers and individuals with Parkinson’s are invited to share their thoughts on treatment, symptoms and available resources. The discussions especially focus on new resources, such as exercise as a means of treatment. Reno says tai chi, yoga, dance and boxing can all help flex the motor skills that Parkinson’s affects.

Beyond open discussion, many of the meetings feature a guest speaker. At one such meeting, SEMO Alliance for Disability Independence representative Julie Hopkins discussed community resources, including a loan closet that SADI offers.

As Parkinson’s can cause limited motor ability, technology is available to assist in everyday tasks. Hopkins says modifications such as weighted meal utensils, toothbrushes and combs borrowed from SADI can help individuals with Parkinson’s be more independent.

Many of the support group participants also visit Dr. Jayanti Ray at Southeast Missouri State University’s speech clinic to develop better speech clarity, voice volume and cognition.

Through the university’s free Speak Out program, Dr. Ray says individuals with Parkinson’s can improve “speaking with intent.” This, combined with a focus on well-coordinated movements, speaking at a louder volume and strengthening willpower, can make a difference in speech for those with Parkinson’s, Dr. Ray says. After completing the one-on-one speech therapy program, individuals can join The Loud Crowd, a speech-focused group intended to retain the skills developed in Speak Out.

While meetings for the Parkinson’s Support Group of Southeast Missouri can often turn serious, the discussion is often dotted with lighthearted humor. Member Liz Burns says she comes to see the other members smile.

“Sometimes it’s hard to remember that it’s not really that hard to connect with people,” Burns says. “I look forward to the connections.”

Group member Pat Murray has been attending meetings for some three to four years. Murray, who was diagnosed with Parkinson’s eight years ago, is a retired dance instructor and counselor. Now she attends support group meetings to help not only herself but others.

“For so many years, people were afraid of Parkinson’s,” Murray says. “If I don’t do anything else in this world, I want to educate others to not be afraid of it.”

Murray met a close friend in the support group. After the friend lost her husband to complications from Parkinson’s, Murray was able to step in with her counseling experience.

Murray says in this way and many others, the group is mutually beneficial.

“We have been a real support for her, and she helped us,” she says of the friendship’s reciprocal emotional support. Murrays says the interaction reminded her of her faith. “It was a real God story.”

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The Parkinson’s Support Group of Southeast Missouri meets the last Monday of every month at 6 p.m. in the Oscar Hirsch meeting room at the Cape Girardeau Public Library. For more information, contact Desma Reno at (573) 651-2678.

Those interested in the Speak Out program can contact speech clinic coordinator Amy Herren at (573) 651-2050 for more information.