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Patient Voices: Parkinson's Disease

Tuesday June 06, 2017

Karren Barrow

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Alyssa Johnson, 43, Santa Cruz, Calif.

Alyssa Johnson, a project manager for the University of California, had cramps in her shin beginning in 2003. A year later, she found out that this was the first sign of early-onset Parkinson’s disease.

Ms. Johnson, a passionate marathon runner, took two years off from the sport after her diagnosis. Friends and family encouraged her to keep running by participating in a family relay, in which Ms. Johnson ran the shortest leg — three miles.

In 2007, Ms. Johnson completed the New York City Marathon. It took her over five hours to finish, but she was able to raise over $40,000 for the Michael J. Fox Foundation for Parkinson’s Research. In 2008, she completed the Boston Marathon.

Ms. Johnson says she is still somewhat in denial about her disease but keeps her “fingers crossed every day for a cure.”

Confidence Regained, With Surgery

Scott Klempan, 53, San Anselmo, Calif.

Scott Klempan, a carpenter, suspected he had Parkinson’s disease at age 42 when he began to have shoulder pain and a small tremor in his hand. His doctor dismissed his suspicions and told him he had a frozen shoulder. A year later his symptoms progressed, and the diagnosis was confirmed.

Mr. Klempan’s disease worsened significantly over the next five years: He could no longer work, and simple tasks like changing his shirt became a struggle.

In 2003, Mr. Klempan elected to undergo deep brain stimulation surgery to help control his symptoms. It took nine months for doctors to calibrate the stimulation going from the battery packs in his chest into the different areas of his brain, but once that was done, Mr. Klempan was able to sharply lower the amount of medication he needed to control his symptoms.

Soon after the surgery, Mr. Klempan was able to resume an active life that includes skiing, mountain biking, painting and fishing. Mr. Klempan has not been able to return to work full time but says the surgery was the best decision he ever made. “It has given me my life back,” he says.

A New Type of Partnership

Ken Glowienke, 43, Oswego, Ill.

Ken Glowienke, a clinical education manager, was told he had young-onset Parkinson’s disease after coping with a minor tremor for a year. Mr. Glowienke’s Parkinson’s progressed relatively quickly; the tremors that began in his hand soon extended to his entire left side. Then, the tremors began to strike his right hand as well.

His wife, Ann, often has to help Mr. Glowienke button his collar because of his tremors. He also has trouble pouring his coffee and administering the shots of insulin he needs to treat his diabetes. As treatments for Parkinson’s become less effective, Mr. Glowienke is considering a more invasive treatment: deep brain stimulation.

Soon after his diagnosis, Mr. Glowienke and Ann created Focus on a Cure, which raises money for Parkinson’s research. He says his involvement in educating others about Parkinson’s disease helps him cope with his symptoms.

Preparing for the Future

Evelyn Simon, 79, San Francisco

Evelyn Simon suspected that a hand tremor that began in early 1998 was an early sign of Parkinson’s, but she waited almost a full year to see a doctor.

After speaking with a neurologist, Ms. Simon entered a clinical trial for a new type of Parkinson’s drug. It was effective for her and was approved for use soon after.

Nine years later, Ms. Simon’s symptoms are still under control. Ms. Simon finds that speaking to other people with Parkinson’s disease helps her prepare for the future, whether her Parkinson’s worsens or not.

The On and Off Moments of Parkinson’s

Scott Giffney, 46, Homewood, Ill.

Scott Giffney, a stay-at-home dad, first found out he had Parkinson’s disease at age 37, after experiencing minor symptoms for six months.

Mr. Giffney used to own a scrap iron yard but had to leave his job as weakness on one side of his body and other symptoms progressed. Often, Mr. Giffney has a hard time completing simple tasks like tying his shoes. He is now at home full time with his daughters, Alex and Jordan.

As Parkinson’s progresses, Mr. Giffney sees his world getting smaller. He is less able to travel and is sometimes dependent on outside help. But he prefers to keep a positive outlook about his condition. “Somebody always has it worse,” he says.