J. Basil Dannebohm had been to specialist after specialist for five long years but didn’t come away with an accurate diagnosis. But then a doctor noticed the sole of his shoe and asked if he had been tested for Parkinson’s.
Last summer, Dannebohm’s question was answered. Yes, it was Young Onset Parkinson’s Disease; he was 31.
Today, he is moving back to his native Ellinwood after living in San Francisco. His new position is Ellinwood Chamber of Commerce administrator; he is also a writer and public speaker.
Dannebohm will share his insight and offer practical advice about the disease at the next Parkinson’s Support Group meeting. It is scheduled for 7 p.m. Tuesday, Aug. 27 at St. Rose Ambulatory & Surgery Center in the basement-level St. Dominic Room.
The meeting is free and open to patients, caregivers and anyone else interested in learning about Parkinson’s.
“It all started with a simple fall,” Dannebohm recalled. “I went to a cardiologist, immunologist, neurologist and rheumatologist, and was treated for multiple sclerosis. But I was getting worse.
“Then I went to a doctor, hopped up onto the table and stuck my leg out,” he continued. “The doctor noticed the bottom of my shoe, gave me a suspicious look and checked my reflexes. My shoe told him I had been dragging my feet. He asked if I had been checked for Parkinson’s.”
Tests indicated a dopamine deficiency, a common finding in Parkinson’s patients. The disease affects nerve cells in the brain that normally produce dopamine, a chemical that transmits signals between areas of the brain.
“I always said if I just knew the diagnosis, I would be fine,” Dannebohm said. “But I admit I lost my composure; it became real.”
His current symptoms include a tightening of the jaw, involuntary movements, tremors and dragging of the feet. Some days are good, some not so good.
One practical tip Dannebohm will discuss at the St. Rose meeting is keeping a journal. “This helps you remember things and it helps the doctor too,” he said. “You can compare how things are going since the last visit.”
He also recommends getting an Aware in Care kit from the National Parkinson’s Foundation, which provides many free services and products. The kit includes a hospital action plan, ID bracelet, medical alert card, medication form, fact sheet and reminder documents.
“This is a good tool, not only for hospital use, but also while you are traveling,” Dannebohm said, noting patients should wear the awareness bracelet so healthcare providers will have the information.
“I also strongly recommend giving back to others,” Dannebohm said. “I approached it from a practical perspective and learned there is life after a Parkinson’s diagnosis. I help with fundraising for the Michael J. Fox Foundation and worked toward a resolution naming April as Kansas Parkinson’s Awareness Month.
“I have looked at this as a new chapter in my life,” Dannebohm said. “I wouldn’t be in Kansas today if I hadn’t been diagnosed. It is a new beginning – to come back home.”