The symptoms start with little notice -- loss of smell, fatigue, changes in speech or difficulty swallowing, but then the hands start to tremble and walking is like a shuffle. At some point, a physician will make the diagnosis of Parkinson’s disease.
There’s now a label on the symptoms, but where do families turn for support and education? That’s where the newly organized Southwest Parkinson’s Support Group can be of help.
Roxee and Mike Jones from Fargo are helping organize the group at the suggestion of Roxee’s dad, Donald Lutz, of Dickinson, who is living with Parkinson’s.
“We saw a need,” said Roxee, who serves on the advisory board of the Parkinson’s Foundation Midwest Chapter. “North Dakota has the third highest per capita incidence of Parkinson’s disease.”
Parkinson’s disease is a neurological condition. Nerve cells products the chemical dopamine, which transmits signals within the brain to produce smooth movement of muscles. In Parkinson’s patients, 80 percent or more of these cells are damaged. This causes the nerve cells to fire wildly, leaving patients unable to control their movements.
The support group’s November program will focus on Parkinson’s medications led by pharmacist Dawn Pruitt from Dakota Pharmacy. The meeting is 6:30 p.m. Tuesday, Nov. 20, at Edgewood Hawks Point.
“In other words, it’s to help patients manage the medications,” said Mike, adding, “Parkinson’s is the snowflake disease -- everybody is affected differently.”
Several support group members shared their experiences with Parkinson’s:
JoAnn Decker’s husband, Martin was diagnosed with Parkinson's shortly after he retired.
“He was very slow and started to shuffle and drag his right leg. After that I noticed from pictures his facial expressions were flat… A year after that, the doctor finally diagnosed him. He’s at home and does well. We’ve finally started exercising…Doctors always said to exercise, but he never would do it. Finally, something woke him up and he goes to the Community Center.”
“The hardest thing for Martin is he speaks so softly, yet he feels like he’s yelling,” Decker said adding “We’re going on a Branson bus trip. I feel we have to continue to do stuff as long as he’s able.”
Rebecca Lutz and Roxee Jones are sisters. Their dad, Donald has had Parkinson’s for about 16 years and Rebecca recently moved back home to help their mom care for their dad.
Rebecca sees the support group as helping with education and camaraderie.
“It’s sharing things. Our experiences are so similar… OK I’m not the only one experiencing this,” she said.
Galen Sickler, who was diagnosed with Parkinson’s two years ago, has been attending meetings in Bismarck. He lost his sense of smell 15 years ago, but didn’t know what caused it. Then he was kicked by a cow, and that was blamed for symptoms.
“One day, my hand started shaking and I saw the doctor… He said it could be a stroke, it could be Alzheimer’s, it could be Parkinsons,” he said.
His daughter became proactive and sought out a movement disorder specialist at Fargo.
“I had five out of the six symptoms,” said Galen. “The last couple of years, I was yelling in my sleep, had nightmares, sleep apnea, and was moving my legs 100 times an hour -- my wife didn’t get much sleep between the yelling and kicking.”
Galen continues to farm, saying it’s the best way to keep active.
“Basically I’m in higher function and if I get worse, I want to make sure I’m on top of it right away,” he said.
Medications have stopped his nightmares and stopped the leg movements. His humor remains in tact.
“My wife has hearing aids and I was blaming her hearing instead of my voice,” he said. “I’m going to ‘Big and Loud’ program (at Bismarck) and they give you the sense of where your voice should be.”
Roxee Jones has multiple titles related to Parkinson’s -- she’s also on the advisory board of Marv Bossart Foundation for Parkinson’s, is a Rock Steady boxing coach, a Parkinson’s Wellness Recovery instructor and a personal trainer.
“The foundation asked if we’d be willing to go around the state to help start support groups and possibly Rock Steady affiliates --that’s what we’re in the midst of doing now,” Mike said.
Rock Steady is based on premise that boxers train for agility, speed, muscular endurance, balance, hand-eye coordination, footwork and overall strength. At Rock Steady, the opponent is Parkinson’s disease. Research has shown that forced intense exercise may reduce, reverse and delay Parkinson’s symptoms.
Roxee said Parkinson’s has five stages that progress over time -- stage one where symptoms affect one side of the body, stage 2, affecting both sides of the body and tremors increase, then up to stage five when a patient needs care around the clock.
“Life expectancy is the same whether you have Parkinson’s or not… In my mind, it’s your will against Parkinson’s -- you need to fight back with all your might,” said Roxee.
Roxee was the first person sponsored by the Foundation to be certified as a Rock Steady boxing coach.
“I was teaching a Parkinson’s Wellness Recovery Program for two years before that, all because of my dad,” said Roxee.
Attitude is an important element to hold Parkinson's at bay -- just ask Galen.
“It bothers my wife more than it bothers me. My dad would say just do it… My wife can see differences more than I do. I’m more pragmatic about things. I don’t have any choice. Either you live your life the way you want or sit and sleep it away until you slowly disappear.”
Anyone interested in the support group needs to just come… the December program is a Christmas potluck. Rebecca Lutz will be organizing the meetings. For questions call 590-3782 and leave a message.