Steve Wolf never thought about Parkinson’s Disease. It didn’t occur to him, even after he began experiencing some of the symptoms.
Then, at a social gathering with some friends, a person reached out to his wife, Bev.
“She said to Bev that there is something wrong with (me),” Wolf, 76, said, “and that I better get checked out by a doctor.”
So he did. After the neurologist eliminated any other disease, he finally came to the conclusion — Wolf had Parkinson’s. He has now been diagnosed with the progressive disease for three years.
Wolf has been able to limit some of the progression, but said without his wife — and caretaker — Bev around, he said he would be struggling to do so.“I can’t tell you how important she has been in our fight against PD,” Wolf said.
Bev said she noticed Steve struggling with balance during a skiing trip before the diagnosis and not noticing certain smells in the kitchen, but she also did not think it was Parkinson’s.
“I was surprised when he was first diagnosed,” Bev said. “But, it did help explain his symptoms.”
Bev also has a medical background and thinks it has made it easier working with Steve.
“I recently retired as an occupational therapist,” Bev said. “I only worked with children, but I think it does help. It is still a challenge everyday. We all have challenges and somehow you just deal with it.”
One of those challenges is the short-term memory loss that Steve deals with because of Parkinson’s. According to the American Parkinson Disease Association, people with Parkinson’s disease “may have trouble recalling information, but in general, memory is less impaired in Parkinson’s Disease compared to Alzheimer’s disease. In PD, people frequently recall information more readily when given cues or choices.”
“I have to keep a schedule, keep track of doctor appointments and take notes for Steve,” Bev said.
Bev also helps Steve keep motivated — which he admits can be hard day-to-day.
“I used to be pretty verbal,” Steve said. “I considered myself pretty articulate with my speech. My speech has been a problem. So, I would want to avoid social situations, but Bev encourages me.”
The couple also tries to keep up with walks and are getting used to a change in responsibilities.
“Now I have to tell myself I need to get the ladder and clean the roof off,” Bev said. “But, I also have to know when to ask others for help.”
They also agree there needs to be a balance in life — which involves understanding when to push it (with verbal or physical exercises) and when to back off. One way the couple tries to keep each other calm is agreeing to “60-second hugs” in stressful moments.
“It helps shift the intensity,” Bev said.
Steve also participates in the Rock Steady Boxing at Pavitt Health and Fitness. Bev said the program helps Steve not only keep up with his fitness — and hopefully slow the progression of the disease — but she also said she believes it helps him cognitively because he has to switch hands and hit certain spots on the heavy bag.
“It really helps in challenging the brain,” Bev said. “It shifts things up for him.”
Steve, like others who participate in the program, also said he likes the camaraderie of working with others in the same physical situation.
“It’s a good social activity because it can be an isolating disease,” Steve said.
Both agree Parkinson’s has not been an easy battle, but staying strong in the fight makes it easier.
“It really helps having the support of my wife,” Steve said. “You have to have that whole fight back attitude.”
“You have to try to stay positive, but there are certainly ups-and-downs.” Bev added. “You have to try your best to both not get down at the same time. It really helps to have support of friends and family. The thing is the caregiver still has to take care of themselves, as well.”
Parkinson’s Disease: By the numbers
• Approximately 1 million Americans live Parkinson’s disease, which is more than the number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease (or Amyotrophic Lateral Sclerosis) combined. Approximately 60,000 American are diagnosed with Parkinson’s every year.
• More than 10 million people worldwide are living with PD.
• Men are 1.5 times more likely to have Parkinson’s disease than women
Parkinson’s Resources in Juneau
BIG and LOUD Program
Bartlett Regional Hospital, 3260 Hospital Drive
BIG run by Rachelle Cummins, LOUD by Marisha Bourgeois
Contact: 796-8431
Monthly Parkinson’s Support Group
Meetings: Last Tuesday of the month from 6:30-7:30 p.m. at Juneau Pioneers Home main dining room, 4675 Glacier Highway
Run by Southeast Senior Services
Facilitator, Tammy Guiller
Contact: 463-6163
Rock Steady Boxing
Pavitt Health and Fitness, 10004 Glacier Highway
Tuesday and Thursday from 11 a.m.-12:30 p.m. and Saturday 9-10:30 a.m.
Contact: Coaches Janet Valentour, 723-3390 and Keegan Caroll, 723-7925
http://juneauempire.com/local/news/2018-04-22/battling-parkinson-s-together
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