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| Ken and Susan Smith Greenville, SC |
April 21, 2016
Ken Smith was the fixer-upper in his household, the one always tinkering with something, his wife said.
But one day, the hands that fixed things began having difficulty with simply writing a check.
That prompted a visit to the family doctor, which resulted in Smith’s diagnosis of Parkinson’s Disease.
He and his wife, Susan, have been living with the disease - a chronic and progressive movement disorder - for nearly three years now.
As they've worked to maintain a quality of life for themselves, they've also been looking out for other sufferers of Parkinson's.
Ken Smith has been a leader in the sense of sharing his experiences and his knowledge, and providing others in the Greenville Area Parkinson Society (GAPS) peer group a chance to see the success you can have it you undertake certain types of therapies or if you do certain activities, said Tim Bishop, executive director of GAPS.
Both Ken and Susan are part of a movement to Strike Out Parkinson's.
That movement is an event happening on April 23 on Fluor Field. It will raise money to support the programs and services offered by the Greenville Area Parkinson Society (GAPS). The money raised offers education, support and therapy programs to the over 5,000 Upstate families affected by this disease.
Bishop describes the event as a "community awareness raiser."
"There's over 5,000 people with Parkinson's in the Upstate and most of them have no knowledge of the services we have available to them," Bishop said. "We want to grow and become much larger because we know there’s so much unmet need."
A big part of Strike Out, said Susan Smith, a volunteer on the Strike Out committee, is to encourage people that either have Parkinson's or a caregiver to come out and find out that there are resources.
The ability to access resources through peer support groups offered by GAPS was a reason the Smiths moved to Greenville from Michigan, though their son and grandchildren have lived here since 1998.
The couple lived in a small town in Michigan where they weren't close to hospitals and doctors and "there weren't support groups," Susan Smith said.
"When we heard about this in Greenville, we started to come. Once a month they have speaker meetings and then once a month they have the peer groups," she said. "It was a tremendous help because it’s educational. The speakers each month talk about a different aspect of Parkinson's."
The peer group, she said, is an opportunity for those with Parkinson's and their caregivers or spouses to share what's happening and how they're dealing with aspects of the disease.
Ken Smith, a retiree who has worked in manufacturing management and sales of engineer products, said the biggest thing that Parkinson's has done for him is given him fatigue and apathy.
He said about a year after he was diagnosed, he "finally got out of the denial stage and into the reality stage of it all."
He began to sink into depression.
"I had a very difficult time sleeping and I started losing weight," he said. "I was getting really down and out so I went back to my family doctor and he says, 'Ken we’re going to fix this.'"
Smith was placed on antidepressants and anti-anxiety medication. He finally feels like a human being again.
He encouraged members of his peer group to seek help if they think the same thing is happening to them.
"Don't let your pride get in the way. You have to do something," he said.
The conversation that Ken Smith is having with his peers is that "you can’t hide yourself away. You've got to connect and be with others because the depression and the anxiety can just become overwhelming," Bishop said. "This is a disease that doesn’t go away. It’s progressive but Ken is doing physical therapy, exercise classes, all the things you can do to slow it down."
There's a lot of home on the horizon with new medications and new treatment for Parkinson's Bishop said,and one day they'll find a cure.
"Until then, you've got to fight everyday," he said.
Susan Smith said in the caregivers group, which is predominately women at GAPS, "we encourage the other women to take care of themselves and get out if they can or get help so they can get out."
Some people with Parkinson's have progressed to where they need wheelchairs or a walker.
"Falling is a big thing with Parkinson's so some people are afraid to leave their spouses out of fear that they’ll fall or they’ll forget to take their meds," she said.
But, Ken Smith said, "the spouse as the caregiver needs to get away as best as he or she can in order to keep their sanity."
Parkinson's is different for everyone who has it, as far as how the symptoms manifest, Bishop said, but the one thing many of the patients have in common is the willingness to keep fighting.
"I am in awe of what all these individuals do to keep getting up every morning," he said. "I feel ashamed that I don’t do a lot of those things and I have a quality of life that they fight for everyday. So Strike Out Parkinson's is all about of celebrating what you can do with Parkinson's and to come together and learn how you can support each other and do more."
Strike Out Parkinson's will be from 10 a.m. to Noon. There will be a walk, balloon release, music, informational booths for those who want to learn about Parkinson's and more.
http://www.greenvilleonline.com/story/news/2016/04/21/greenville-couple-help-strike-out-parkinsons/83321832/
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