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Coming to grips with Parkinson’s disease

There is no one symptom, no one level of symptoms, no one treatment for Parkinson’s disease. The disease is as varied and unique as the persons diagnosed with it.

To promote education about Parkinson’s disease (PD) and ongoing research into the disease, the Parkinson’s Disease Foundation has declared April as Parkinson’s Awareness Month.

Two Bureau County men are telling their stories of being diagnosed with PD, their treatments, and their encouragement to other families facing the disease.

Looking back on to nearly 10 years ago, Gerrit Stevenson of Princeton said he lost his sense of smell around 2006-07 but never once thought it could have anything to do with an early onset of Parkinson’s disease. But he’s since learned the loss of the sense of smell is often, but not always, associated with persons developing PD.

The tremors in Stevenson’s hands didn’t begin until several years after he lost his sense of smell. By 2009, the occasional shaking of his hand became more frequent, and in February 2010, he went to the Mayo Clinic. But because the disease was in its earliest stages, a diagnosis wasn’t able to be made at that time. He continued seeking answers and went to Rush Memorial Hospital in Chicago, where the PD diagnosis was made.

Life has its challenges with PD, Stevenson said. He has started taking medication to control the tremors, but there are so many different types of medications the key is finding the right one to work for you, he said.

A retired truck driver of more than 40 years, Stevenson said he is doing some finishing work in his basement, but it’s hard to hold the tape measure still. He has to be extra careful so he doesn’t trip and to make sure he holds on to something. He’s always loved to dance and has a group of friends with whom he’s danced for several years in Ladd. He still goes dancing with his friends, and on those times when he feels like just watching, his friends see to it that he still gets out on the dance floor, he said.

The most important thing a person with PD can do is to exercise, and do a lot of it, Stevenson said. He tries to exercise five hours a day, including walking five or six miles each day, swimming and doing strengthen training and toning. And, of course, he enjoys his line dancing.

In some ways, the biggest challenge that he sees with Parkinson’s disease is first of all the general lack of knowledge and understanding of the disease, Stevenson said. At times, he’s struggled with being ashamed of having the disease, and he’s not wanted others to know.

“But I figure that if I can help someone else recognize the symptoms, maybe raise more awareness to the disease and the needed research, if I can make a difference for someone in the future, then that’s what I want to do,” Stevenson said.

Though there is no known cause for PD and no known cure, there is treatment, Stevenson said. Also, there is a local support group at St. Margaret’s Hospital in Spring Valley, which meets at 1:30 p.m. on the first Monday of the month.

In telling his story, rural Sheffield resident Gary Taets’s journey with Parkinson’s disease has included having deep brain stimulation surgery to control some of the symptoms and remove the tremors in his hands. The surgery included implanting brain pacemakers on either side of the skull and connecting the pacemakers through wires to implanted batteries under the skin of the chest.

Taets had the surgery done in two stages, for the right side and the left side, in December 2009 and in the summer of 2010. Each surgery lasted about eight hours.
Taets decided to go for the surgery because his symptoms had progressed, and the medications just weren’t helping anymore.

As a teacher at Annawan High School, Taets first started noticing something was wrong when he was writing on the chalkboard at school, and his writing would get smaller and smaller as he worked his way down the line. Tremors started on his right side but eventually moved also to the left side. His memory wasn’t as strong, nor was his ability to multi-task.

Taets received his PD diagnosis on his 50th birthday. He retired from teaching when he was 53 years old and had his brain surgeries when he was 59.

Though the tremors have been controlled through the surgeries, he still has problems with his balance when walking, Taets said. Since the surgeries, his PD medication has been cut in half. Again, not all people will have the same symptoms, nor will they have all the same treatment, he said.

Taets and his wife, Peggy, said there is a grief process when a family member is diagnosed with PD, but there are support groups for not only for the person with the disease, but also for their caregivers. There are also educational symposiums and meetings to help people become more informed about PD.

Taets and his wife said their encouragement to others with PD is to educate themselves, stay positive and to remember to look at all the things they can still do.

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A look at Parkinson's disease

• Parkinson's disease is a progressive disorder of the nervous system that affects your movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand.

• While tremors may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement.

• Although Parkinson's disease can't be cured, medications may markedly improve your symptoms. In occasional cases, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.

• Risk factors include age, heredity, sex and exposure to toxins.

• As many as 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, and this number does not reflect the thousands of cases that go undetected.

• Incidence of Parkinson’s increases with age, but an estimated 4 percent of people with PD are diagnosed before the age of 50.

• Men are one and a half times more likely to have Parkinson's than women.

Source: Parkinson's Disease Foundation.

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