Laporte couple shares journey of living with Parkinson's
Sandy and Gary Roerick of Laporte are using what they have learned during their journey since Sandy’s diagnosis with Parkinson's to help others.
The support group the couple had been attending in Bemidji stopped meeting when COVID hit in 2020 but is starting up again this month.
The Northern Minnesota Parkinson’s Support Group will meet at 2 p.m. Wednesday, Dec. 14 in the Windsong building at 1010 Anne Street NW in Bemidji.
“Anyone who has Parkinson’s or is a caregiver is welcome to attend,” Gary said.
Masks are required to enter the building but optional during the meeting.
“It’s not just for people with Parkinson’s but their caregivers too,” Sandy said. “Every nine minutes someone is diagnosed with Parkinson’s.”
Sandy was diagnosed with Parkinson’s disease in 2016.
“I had twitchy eyelids and my hands would tremor when I tried to write,” she said. “Some of the other things the neurologist pointed out was that I walked very stiff and rigid.”
“There is no cure,” Gary said. “Parts of the brain are dying.”
Medication can improve symptoms but often becomes less effective over time.
“There are also tons of side effects with medication that can include hallucinations at night,” he said. “For some people the side effects are worse than Parkinson's.”
Gary said while the cause of Parkinson’s is unknown, two groups with higher incidences of the disease are farmers who apply herbicides and other chemicals and people with previous head injuries, such as football players and boxers.
“When Sandy was in school she was in an accident and hit her head on the windshield and broke the windshield,” he said.
Sandy sees a neurologist every six months. “There’s nothing they can do except help you manage your medications to help with symptoms,” she said.
Gary said he is hopeful medications will continue to help Sandy for a decade or longer.
“People with Parkinson’s age faster,” he said. “They start shrinking down, shuffling their feet, not going out in public as much. Sandy used to help at church, distribute communion. Within a couple of years with the shaking she got self-conscious.”
Sandy said cold weather makes her muscles tighten up, making getting around in the winter more challenging.
Gary said he has learned to be careful with rugs and other things in the house Sandy may trip over.
“When things tighten up, their feet drag, so tripping hazards can be a problem,” he said. “And sometimes, when Parkinson’s gets more advanced, they don’t remember their meds, so the caregiver will track medications and appointments.”
Support on the journey
Sandy said the support group helped her feel less alone.
“It is nice to talk to other people with Parkinson’s and hear how they are dealing with their symptoms,” she said.
Gary has recently taken over leading the support group.
For caregivers attending, he said learning how to assist their spouse is helpful.
“Even just helping them understand how the person with Parkinson’s feels,” Sandy said. “Sometimes Gary gets in a rush and says ‘Let’s get going, let’s get going.’ I have one speed and as much as I want to, my body won’t go faster like I want it to. Being patient is a big part of it.”
Staying active is key
Sandy attends a weekly boxing and exercise class at CHI St. Joseph’s Health in Park Rapids.
“You’re using the muscles in your arms while thinking at the same time,” Sandy said. “You’ll do a left jab, a right cross. That’s exercising your brain while exercising your body.”
Sandy said a punching bag is used at the hospital while at home Gary wears special gloves she can punch. “He’ll hold his hands up and he has thick gloves I can hit on his hands,” she said.
Some Parkinson's patients need speech therapy for talking or swallowing.
“You have to really work to get ahead of Parkinson’s,” Gary said. “They stress exercise.”
Sandy said in the summer she enjoys gardening and in the winter she rides her exercise bike, boxes once a week and does some physical therapy exercises at home.
“Any kind of exercise you enjoy doing, you will do it more,” she said.
Getting out to socialize is also important.
“Emotionally and psychologically, you tend to want to go inward and just kind of hibernate and isolate yourself,” Sandy said. “It’s better to be out and be with other people. That helps stimulate your brain more and keeps it active more than just playing brain games on the computer.”
As Parkinson’s progresses, some people end up in a wheelchair. Gary is also a resource who can help with that. “The Mother Theresa Council of the Knights of Columbus churches in Laporte and Nevis will provide free wheelchairs to anyone who needs one, not just people with Parkinson’s,” he said.
A glimmer of hope
Gary said a treatment called DBS (Deep Brain Stimulation) has shown promising results in some Parkinson’s patients.
“They drill two holes in your skull over your brain,” he said. “Then they put electrodes in. You’re conscious while they’re doing this. The hope is this treatment can lessen the need for medications. You go home and recuperate for one to two months and then they bury these wires and put a rechargeable battery in your chest cavity. We’re looking into that. But they want to make sure there will be a good outcome because it’s such an invasive procedure, so there is a lot of testing to go through first.”
The electrodes stimulate the brain. “Some people have been able to get off 50 to 90% of their medications,” Gary said. “There is no cure for Parkinson’s, but the DBS can slow things down. That’s the big glimmer of hope.
“It’s not for people who just got diagnosed. It’s for people when the medications are no longer working or you’re having so many side effects you’re at the end of your rope.”
Actor Michael J. Fox is one of the more well-known people with Parkinson’s. His foundation is one of the resources that has information and resources about the disease. Research is ongoing to try to find a cure.
“I find a lot of information on the Parkinson’s Foundation website,” Sandy said. “They have different programs you can sign up for. It’s like a Zoom call with guest speakers and Fitness Fridays exercises you can do at home. They even have it on YouTube for those who can’t participate at the meeting time. The American Parkinson’s Disease Association has lots of information too.”
For more information about joining the Northern Minnesota Parkinson’s support group or getting a free wheelchair, call Gary at 218-760-8266.
The Rehab department at CHI St. Joseph’s Health in Park Rapids offers exercise classes designed for people with Parkinson’s. PWR!Moves is from noon to 1 p.m. Mondays and Rock Steady Boxing is from noon to 1 p.m. Wednesdays. Sign up by calling 218-616-3021 or 218-616-3016.