EXCHANGE: Parkinson's support group attracting big numbers

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QUINCY, Ill. (AP) — LeAnn Kassing cannot help herself.

A care manager at Quincy Medical Group, Kassing is unable to stop smiling when she talks about the new Parkinson's disease support group she helps facilitate.

"It's unbelievable," said Kassing, a registered nurse. "I have never seen anything like the way this group has taken off.

"At our first meeting, we had more than 100 people. We didn't have enough chairs for everyone. We even had to cut off the question-and-answer period."

Jo Howd, the community outreach coordinator at QMG, is also amazed at the outpouring of support for such a venture.

"We definitely have to plan for more people," said Howd, figuring the group will continue to grow. "There are a lot who want to be involved."

The group's second meeting is scheduled for Saturday, Dec. 12, at the Quincy Public Library, where organizers feel a large conference room will better fulfill the group's needs. The first meeting was held in October at Adams Pointe.

Plans are for monthly meetings to occur, typically on the second Saturday.

What spurred the creation of such a group was the interest shown by Terri and David May of Quincy, coupled with the willingness of QMG officials.

Terri, 66, was diagnosed with the disease in August 2014. Since then, she and her husband have been proactive in their efforts to attack Parkinson's head-on and help create awareness about the disease.

"We are well-educated on the subject," Dave May said.

After Terri's diagnosis, Dave said they quickly became aware of the lack of such support groups. There were none in Quincy and the closest in the region were in Jacksonville, Springfield and St. Louis.

The Mays attended as many meetings as possible, gathering information.

"QMG then stepped up (to help get a group started in Quincy)," Dave May said.

Parkinson's is the second-most common neurodegenerative disorder after Alzheimer's disease and affects approximately one million people in the United States.

Some of the disease's more common symptoms are related to loss of motor skills, mood alterations, change in voice and sensory/sleep difficulties. Tremors are most commonly linked to Parkinson's.

Terri May said while most people associate tremors with Parkinson's, the disease goes much deeper.

"(Parkinson's) is more than tremors," she said. "Thirty percent of the people with Parkinson's don't have tremors. There are other symptoms that are far worse. Some have depression, anxiety, constipation ... "

Parkinson's is most common in the elderly, although much younger people can also be affected. The average age of onset is around 60 years, with both sexes affected equally. There is no cure for Parkinson's.

Studies have indicated exercise in middle age reduces the risk of Parkinson's disease later in life.

"The most important thing outside of specialized meds is exercise," said Terri May, who walks, takes part in assorted exercise classes and hopes to learn to box next.

Boxing is an activity that is excellent in helping those with Parkinson's maintain their strength and flexibility.

A number of environmental factors have been associated with an increased risk of Parkinson's, including pesticide exposure and head injuries.

Rural environments like much of the Midwest have tended to have higher rates of those affected by Parkinson's.

"Genetics loads the gun and the environment pulls the trigger," Terri May likes to say, in response to the reports of more Parkinson's activity in rural-type regions like the Quincy area.

Traditionally, Parkinson's has been considered a non-genetic disorder, although around 15 percent of individuals with the disease have a close relative who has the disease. Terri May has a sister who was diagnosed with the disease several years before she was.

QMG officials are excited to be part of the support group, which they say is important for both those diagnosed with Parkinson's and their caregivers.

"So many have been eager to help get the message out," Kassing said. "Right now, we're planning for the future, about what we can offer and about what resources we can provide."


Source: The Quincy Herald-Whig,


Information from: The Quincy Herald-Whig,

This is an Illinois Exchange story shared by The Quincy Herald-Whig.

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