April brings light to Parkinson's awareness
In recent weeks, the Peace Bridge, the Electric Tower and Niagara Falls have bathed in blue light, a reminder that April is Parkinson’s Awareness Month.
"Yes, April is a month for Parkinson's, but everyday is a Parkinson's Disease day for the families and the patients," said Dr. Vilasini Shanbhag, a board member with the National Parkinson Foundation Western New York. Her husband, Dr. Madhu Shanbhag, suffered with Parkinson's for nearly 20 years before he passed away in 2014.
"Every day is a living hell," she said.
Dave Wolf, now 56, was diagnosed with Parkinson's in October, 2007. A slowing of motor skills and body tremors are common among Parkinsonians. Wolf has dealt with those ailments and more.
"I'll have nightmares. I'll scream in my sleep," Wolf said. His wife is unable to wake him from the terror.
"The other night I guess I was having an argument with my father. And I guess I was getting quite upset. She said I was screaming for an hour."
Wolf spent his career as a mechanical engineer in the aerospace industry. He speaks with understandable pride of his work on the Black Hawk helicopter, the C-5 and the Space Shuttle, to name a few. Finding solutions was a key part of his professional life. He's taken a similar approach to Parkinson's.
He underwent an operation known as Deep Brain Stimulation.
"The operation is a little on the stressful side," Wolf recalled.
"They basically bolt you into a halo. And then they bolt the halo to the table."
While bolted to the table, the patient remains awake as two holes are drilled into the skull. Two electrodes are attached to the brain.
Though Wolf says the results didn't reach expectations, he was able to work for another five years.
Dr. Vilasini Shanbhag recalls how Parkinson's eventually forced her husband to surrender his successful urology practice. Madhu stopped driving.
"In my opinion, he was becoming a prisoner of his own mind. He could think the words, but couldn't bring it out."
Though her husband was becoming more and more incapacitated, the couple was able to attend shows at Shea's. They were able to visit favorite places in Niagara Falls and Niagara-on-the-Lake.
"I had a whole group of people who helped me take care of him. I don't think I would have been able to do it by myself."
Dr. Shanbhag wants to press that point. That help, even small gestures, from friends and neighbors is valued by Parkinson's families.
Some Parkinsonians are finding help from service dogs. In Dave Wolf's case, his service dog is Penny, a mix of beagle and Labrador, who was rescued last June. Service dogs can be trained to retrieve items, like remote controls and phones. Parkinsonians are known to come to a stop, unable to remobilize. A nudge from a service dog can get them walking again.
A Night of Hope for Parkinson's will take place Friday night at the Millennium Hotel. It's a wine tasting event that helps raise funds for National Parkinson Foundation Western New York. The organization works to provide comfort and relief to Parkinsonians and those charged with their care.