Parkinson’s Disease support groups shares, helps peers cope with daily issues

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ANKENY – April is Parkinson’s Disease Awareness Month. It’s a disease that doesn’t just affect older people, but it’s becoming increasingly prevalent among those in their thirties and forties.

Even as modern medicine advances, the numbers are only climbing higher. It’s why one man has a clear message: The disease will slow you down, but it doesn’t have to ruin your quality of life.

“When I first got the diagnosis, it was pretty much a shock,” said Sean Jenkins, the founder of the Young Onset Support Group and board member for the Iowa Parkinson’s Disease Association. “Like everybody that has it, especially at my age. I’m 45, and I’m looking at a long career ahead of me and I’ve got a lot of plans and goals.”

Like more than 10 million people worldwide, Jenkins is living with Parkinson’s Disease.
Forced to quit his job at 45, he started this support group to help other people who share his struggles.

“Parkinson’s is not who you are, you’re still the same person,” said Jenkins. “You just have a little more of a challenge.”

In this group setting, like the one he’s helping run in Ankeny, you’ll barely notice many of Sean’s symptoms.  And that’s the case for many people living with the early stages of Parkinson’s Disease.

Jenkins says he doesn’t want to be treated as a victim, though that can be a struggle even for him these days.

“You get a little bit depressed and start wondering whether you’ll be able to start doing the things you want to be able to do in life and if people are going to look at you different,” said Jenkins.

At this session, the group brought in a medical expert to answer some pressing questions.

Gail McGaughy is a physical therapist who helps people cope with the physical wear and tear of Parkinson’s Disease. She attended the meeting to help learn more about how to help patients.

But the whole process can be draining for those who’ve never dealt with what’s to come. 

“There will be an end stage and that’s difficult,” said McGaughy. “It’s difficult to see your friends beginning to decline as well.”

One thing she can stress is just how critical it is to know you’re not fighting alone. .

“And it really comes down to an acceptance,” she said. “Some people will say, ‘I have Parkinson’s, but it doesn’t have me.’ And you really have to be able to adapt to that mindset.”

For Jenkins, this group has changed his outlook, but not his resolution to keep going.

“Just because I’ve got Parkinson’s doesn’t mean that I have to change my goals,” he said. “I’ve just got to do them a little bit differently.”

Some people can live with Parkinson’s Disease for 20 years before they start to notice some of the symptoms of the disease. Early signs can include a loss of smell, declining motor skills and a wide variety of issues while you try to sleep. 

People can live with the disease for around 40 years. For more resources to help you live with the disease, please click here. 

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