Lots of folk are living with Parkinson's
Some were only diagnosed within the last five years. Some have been diagnosed for 20-plus years. All hold out the same hope that one day there will be a cure for the disease they all are living with.
April is Parkinson’s Awareness Month, and the members of the Parkinson’s Support Group in Detroit Lakes see the benefit of taking on the illness together — for better or for worse.
While some members say they don’t necessarily like hearing what others are experiencing because they know one day they will be going through the same things, others can draw on those experiences as preparation for the future.
“It’s someone to correspond with about what their pains are and activities,” Red Sloan said about sharing thoughts with others in the group.
“It makes me feel better after I’ve been here,” Ruth Hanson said of being a part of the group.
The four main symptoms of Parkinson’s disease are tremors, slow movements, stiffness and trouble with balance. It was symptoms like those that led members of the Parkinson’s support group to the doctor for a diagnosis.
Walter Snyder said that working as a salesman on the road, one time he checked into a hotel behind a man that was blind and in a wheelchair. He said he thought, ‘wow, regardless of what’s wrong with me, at least I’m better off than that guy.’
One month later, he was diagnosed with Parkinson’s, and still felt that at least he wasn’t blind and in a wheelchair.
“A lot of people are worse off than a lot of people,” agreed group organizer Sue Sorensen.
Snyder said his wife took the diagnosis harder than he did.
Ole Olson said he went to the doctor because he could see a change in his handwriting. When he would sign his name, it started out large and became very small by the end of his name.
Other said they saw the first sign that something was wrong when they stumbled or fell, they couldn’t keep up with those around them, tremors began and it felt like the “tops of my shoes had holes in the them,” Olson said.
Though Parkinson’s is supposedly not hereditary, several of those in the Detroit Lakes group say their siblings have the disease also.
“We’re traveling down the same road together,” Nettie Momb said of her and her three siblings who have been diagnosed.
Yet others say they are the first in their families to be diagnosed.
Snyder said he’s the first in his family to be diagnosed, though his wife’s family has experienced it.
When they receive the diagnosis of Parkinson’s disease, while it’s not something people want to hear, it’s also a relief to finally have a diagnosis.
“It’s kind of like a broken leg, you figure they’ll fix it,” Carol Kratzke said.
But researchers have yet to find a cure. That doesn’t mean there’s still not hope though.
“Michael J. Fox is my hero,” Snyder said. “They just haven’t come up with the right combination.”
Momb said people shouldn’t be surprised with a Parkinson’s diagnosis. Instead, get on medication as soon as possible to slow the progression of the disease.
There are other non-medical programs, like the Big and Loud programs, that can help people work on their walking and speech skills.
According to the Parkinson’s Disease Foundation, about one million Americans live with Parkinson’s disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease.
Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year.
Men are one and a half times more likely to have Parkinson’s than women.
The Parkinson’s Support Group meets the last Thursday of each month from 2 to 3 p.m. The group usually meets in the Emmanuel Nursing Home conference room, but with construction going on at Ecumen throughout the summer, the group meets in Trinity Lutheran Church.
The group is open to anyone.
“Great friendships have been formed from this group,” Sorensen said. “There are such neat people who come to this group.”
Those who would rather meet one-on-one with someone with Parkinson’s disease instead of in a group setting can contact Sorensen at 847-7118 or firstname.lastname@example.org and she will put them in contact with someone.
Follow Pippi Mayfield on Twitter at @PippiMayfield.