Clupny journey 1

Carol Clupny poses for a photo atop the Pyrenees mountain range in 2013. The climb was part of a 200-mile trek across France. The Hermiston woman shares about her journeys after being diagnosed with Parkinson’s disease in her soon-to-be released memoir.

A little more than eight years ago, Hermiston resident Carol Clupny began experiencing symptoms of what she believed to be extreme stress.

Her lip and eyes wouldn’t quit twitching and she felt very shaky when she woke up in the morning.

Clupny saw a doctor who prescribed anxiety medication that he said would help calm her nerves and alleviate the shakiness.

“I had been under a lot of stress at work,” she said. “(The medicine) made me feel happy, but it didn’t help with any of the other issues.”

A couple of months later, Clupny’s husband, Charlie, gifted her a trip of kayaking in the San Juan Islands. While there, she found that she was having problems pulling her own weight, something she had never had a problem with before.

She decided to go back to the doctor, who recommended she see a neurologist.

As she went through tests to diagnose what was wrong with her, she could tell something wasn’t right.

Being a speech pathologist by trade, she said she could tell whether she was performing to a normal capacity on the number of exercises.

“I could tell that I wasn’t doing them quite right,” she said.

Her doctor then decided to put her on a medication that is known to help people with Parkinson’s disease. Two weeks after she started the medication, her symptoms seemed to vanish.

“I got up that morning feeling energized,” she said. “I cleaned the house. Then I realized, ‘Oh crap, the medication is working.’ That must mean I have it.”

Clupny was officially diagnosed with Parkinson’s disease in 2005.

“I wasn’t scared,” she said. “I was glad that I finally knew what was wrong.”

Clupny said right before she was diagnosed, she researched the disease and watched videos of people who were further along.

“I said, ‘OK, I am not going to lay down and die,’ ” she said. “I am going to do everything in my power to stay healthy.”

Since being diagnosed, Clupny said her doctors call her the perfect Parkinson’s patient.

“I try to do everything right.” she said. “I eat right, I exercise. As soon as I heard that Tai Chi helps, I started doing that.”

Last summer, Clupny completed a 200-mile Camino de Santiago hike from Le Puy France and into Spain with friend Leslie Edmiston, who has Multiple Sclerosis. Clupny had completed a similar hike before with her family, though this year she wanted to accomplish the feat by herself.

“It was great because I didn’t have my family to help me,” she said. “Before, I had all the help I would ever need for anything. If my shoe was untied, I could ask Charlie to tie it. This time, if I ever ran into a problem, I had to deal with it myself.”

Clupny said the hike also forced her to take bigger strides and make bigger movements with her body. She said her Parkinson’s disease has caused her to take small steps when she is walking and has made her body really stiff in general. While hiking, she came across quite a bit of mud, which forced her to take larger strides so she wouldn’t sink in as much.

“It was great for me,” she said.

Clupny finished the 200-mile trek in about four weeks.

“After I finished, I felt a great sense of accomplishment,” she said. “I recommend it for everybody.”

In addition to her exercise feats, Clupny also started a Parkinson’s Disease support group in April of this year where she invites both Parkinson’s patients and their caregivers to attend an hour-long session where they discuss the disease, resources for help and more.

“I thought it was the perfect month to start the group because April is Parkinson’s Awareness Month,” she said.

Since the inception of the group, about 10 to 12 Parkinson’s patients and their caregivers have gotten together to talk with one another and provide support for one another in coping with the disease.

“It’s been a very positive experience,” Hermiston resident Ernie Webb said.

Webb said he has experienced symptoms of the disease for years and that he was finally diagnosed five years ago.

“My brain wouldn’t work right,” he said. “I was doing things that I wouldn’t normally do.”

Webb said he also suffers from masking where his face feels like there is a large weight on the front of it and he is unable to show emotion. He said having the chance to come in with his wife, Donna, to the group and visit with other people to see some of the things they are experiencing has been a great opportunity. They also share resources that others may not have known about.

“You don’t feel so alone,” he said.

Clupny said the disease can be just as hard on the caregivers and the group provides both sides a chance to get some feedback and support. She said each week they try to do something different such as watch a video, participate in exercises or just talk with one another.

“I think it has gone really well so far,” she said.

Clupny said the group is open to all Parkinson’s patients and caregivers. The group meets at 1 p.m. the first Monday of every month in M-2 at the Good Shepherd Medical Center Medical Plaza building.

For more information, contact Carol and Charles at 541-720-4256 or 541-567-9420.

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