Helping wife with Parkinson’s, East Bay man becomes advocate for a cure
By Lou Fancher
When the pinky finger on Natalie Clinch’s left hand began in 1997 to move without her wanting it to, she had no idea it would transform her life and her now 48-year marriage.
Twenty-one years later, her husband and caretaker, Bill Clinch, 77, eagerly accepted an exclusive invitation to a gathering he never in a million years hoped to attend, the annual Parkinson’s Policy Forum in Washington, D.C. Co-Sponsored by the Parkinson’s Foundation and the Michael J. Fox Foundation for Parkinson’s Research, the March 19–21 invitation-only event brings 300 selected delegates from the United States along with Parkinson’s experts to the three-day forum.
“I go because I want to be someone who does something,” Clinch says. “I don’t want to sit around and just live with PD. I like learning. Why? So I can better take care of my wife, of course.”
This will be Clinch’s 16th trip to the annual caucus that includes workshops led by public policy and health care advocates, up-to-date reports from science and medical experts and access to members of Congress on Capitol Hill. According to the Parkinson’s Foundation, nearly 1 million Americans and 10 million people worldwide have Parkinson’s, the second-most common neurodegenerative disease after Alzheimer’s. The condition often displays as tremors or facial changes due to a loss of motor control, but Parkinson’s results also in low blood pressure, depression, anxiety and other symptoms. There is no cure. In the United States alone, 60,000 new cases are diagnosed each year.
In an interview in the couple’s Walnut Creek home, Clinch recalls the first visit to a neurologist. “He asked her to take Sinemet. If the tremor stopped, if Sinemet calms it down, you have it. That’s the way a lot of neurologists diagnose Parkinson’s.”
Flash-forward two decades, Clinch says his wife has hallucinations, extreme balance problems and memory loss. Along the way, she has taken medication or received deep-brain stimulation treatment for low blood pressure, anxiety and more. “For the first 10 years, the disease is pretty manageable with meds,” Clinch says. “She has chronic back pain from before Parkinson’s, so the exercise that helps some—well, her ability to exercise was out the window.”
Clinch bought a recumbent bike for his wife, a former physical education school teacher and admirable golf and tennis player. It didn’t slow the progression. They joined the Parkinson Network of Mt. Diablo, a local support group serving people living with or caring for people with Parkinson’s. The organization offers support meetings every third Saturday of every other month, special events, a newsletter, exercise classes, a choral group and an extensive library. He now facilitates a group.
“It told me other guys and women were going through the same thing,” Clinch says.
Although not prone to unburdening the stress of caretaking in conversation, he confesses, the mental debilitation his wife now suffers is hardest to bear. “I dress two people in the morning and undress them at night. I do all the housework, cooking. I have to be by her side, even walking from room to room. I can’t leave her alone. I had to forget about my life. But what gets to me more than anything is the mental part.”
Which is why he’s eager to attend the forum. “I come back energized, every time. Scientists from all over the world, doctors who know the latest meds: Even though we’re farther from a cure than I expected, they haven’t stopped trying.”
Research involving stem cells used to replace natural dopamine-producing neurons lost to the disease, he believes, holds the most promise for finding a cure. A national registry, if it could be achieved, might reveal pockets of people with Parkinson’s where possible environmental or industrial causes could be studied. But in addition to past and recent political action that eliminates or threatens funding to the National Institute of Health and support for clinical trials, he suggests some pharmaceutical companies block the find-a-cure pipeline.
“Even with good people at some companies, I’m unsure other companies want us to find a cure. They’re in it for the business; they want the money.”
Clinch acknowledges the impact actor Michael J. Fox has had on public awareness. “It’s a common mistake to think Parkinson’s is just tremors, just hands shaking. Fox has changed that a little. His scooting around in the chair in interviews on television shows it’s more than tremors. His head moves, he crosses and holds his leg so it doesn’t move around so much.”
In Washington, Clinch will ask doctors about his wife’s hallucinations. “Do I have to settle for it being a progression of the disease? Is there an alternative? She’s reaching out for things that aren’t there. I’d like to know why.”
Bringing a report home to his wife, the local support group and to the couple’s two adult children and four grandchildren, he anticipates continuing on a path unchosen.
“I’ll take care of my health, exercise, eat right. If I’m not OK, I can’t take care of Natalie.”