It’s 4 a.m., but Mark Whitehead is wide awake, playing Sweet Judy Blue Eyes on his guitar in his basement studio. When he’s done, he might work on his artwork with colored pencils, watercolor or oils; tinker with the recordings he’s made of his music or watch early morning news before fixing his wife breakfast.
The insomnia that awakened the 52-year-old Granite City man is one of the more unusual aspects of the Parkinson’s disease he’s struggled with since he was diagnosed with the movement disorder in 2008. In 24 hours, he gets four or five hours’ sleep.
For now, medication is keeping many of his tremors and much of his discomfort at bay. But it’s losing its effectiveness, so that he now has to take 25 pills each day of a medicine called Sinemet to get the same effect that six pills did when he started in 2008.
“Being symptomatic and the drugs not working is like having 100,000 ants crawling on you,” Mark Whitehead said. “I don’t think I’m going to die tomorrow of it, but I’m 52 now. It’s hard for me to see myself being 70.”
Still, he said, “I wake up every morning, and I thank God for the day.”
The progressive degenerative disease has changed everything for Whitehead and his wife, Mary, who were high school sweethearts and married not long after they graduated from Granite City High School South in 1979.
“We’ve taken what we can, and we’ve kind of rebuilt it,” Mark Whitehead said.
Mary Whitehead has supported her husband, including holding a series of fundraising and educational events during April, Parkinson’s Disease Awareness Month.
She’s arranged fundraisers at two area Ravanelli’s Restaurants in coming weeks to benefit the Greater St. Louis Chapter of the American Parkinson Disease Association. The chapter will receive a portion of sales made from 4-9 p.m. April 22 at the restaurant at 26 Collinsport Drive in Collinsville and 4-9 p.m. April 29 at the restaurant at 3 American Village, Granite City. There also will be raffles for donated gift baskets and a handmade quilt.
Mary Whitehead also got Granite City Mayor Ed Hagnauer to make a proclamation recognizing April as Parkinson’s Disease Awareness Month. She also arranged for a fundraising breakfast and an educational luncheon at her employer, Ameren Missouri in St. Louis.
In addition, both Mary and Mark Whitehead take tests of their brain function every three years for Parkinson’s researchers and have agreed to donate their brains for research after their death. Mary Whitehead acts as a “control” without Parkinson’s, while Mark provides information about people with Parkinson’s.
“The diagnosis is not good. You know that it’s progressive, degenerative,” Mary Whitehead said.
The disease comes from a loss of brain control over voluntary movements. It results from the loss of cells that produce dopamine, a neurotransmitter in the brain that controls movement. More than 1.5 million people in the United States suffer from Parkinson’s Disease, most of them over 60.
Mark Whitehead worked 60 hours a week as a draftsman for a consulting engineering firm. Then in the summer of 2006, the father of two children felt his hands twitching while he was attending a Gateway Grizzlies baseball game. As his symptoms worsened, he couldn’t keep up with the demands of his job. So he quit.
He remembers the moment he learned he had Parkinson’s Disease: 10:35 a.m. Jan. 7, 2008. “I spent the first couple of years kind of not doing anything,” he said.
Since then, he’s done what he can. Besides his artwork and his music, he watches one of his three granddaughters once a week.
Some former coworkers organized a new structural engineering company, Structures Inc., and hired him to do part-time drafting.
“They said, ‘Mark, you tell us when you’re getting too much,'” Mark Whitehead said. He does about 10 to 12 hours a week of work. Sometimes he does his work at home, and sometimes his wife drives him to the company’s office in Affton, Mo. Because of his tremors, he doesn’t drive.
“He had to make some accommodations,” said Deborah Guyer, executive director of the St. Louis Chapter and Information & Referral Center, American Parkinson Disease Association. There still are many things a person with Parkinson’s disease can do, she said. “Parkinson’s doesn’t necessarily affect your mind.”
As Mark Whitehead sees it, “I don’t lead a normal life, but that doesn’t mean I lead a bad life.”