When 6-year-old Ben Vanek says his prayers at night, he mentions his "daddy's Parkinson's" and asks that they go away. He knows that this is the disease that his daddy has, but at that age, he can’t understand all about the disease. Nor does he understand yet that his dad is playing an active role in finding a cure.
Michael Vanek has been living with Parkinson’s for 13 years now. He was diagnosed at age 33 with young onset. His progression was slow at first, but his wife, Sherri, says he definitely now struggles with “typical” PD issues. Their 9-year-old daughter, Emily, sometimes helps since she’s good at tying shoes and helping him button his shirts.
A few years ago, he stumbled upon a clinical trial looking at the effect of cycling at a high rate of speed on PD. And that’s how it started, he said. Since then, he’s been involved in trials that range from testing new medicines to undergoing genetic, blood and smell tests. He’s even reaching out to get involved in two others. It’s almost too easy for Michael to be involved. As a pastor, his hours are flexible and his work is literally around the block from Cleveland Clinic. He’s told those at the clinic to let him know when he could be of any help, and he’s signed up for Fox Trial Finder, MJFF’s online clinical trial matching tool, to receive updates about ongoing trials in his area that need someone like him.
In fact, he just got a “trial match” on Fox Trial Finder for a postural study. It’s something he’s excited to hear more about as he’s found he’s struggling more with his gait and posture. “I can do stuff a lot of the other older people can’t do,” the 45-year-old says. “I always have a blast. I tell them whatever I am eligible for, I can do it.”
With more than 360 trials currently on Fox Trial Finder, Michael gets excited when he says there’s a lot going on. “I will absolutely continue doing this until they don't need me anymore,” he said. “It’s an exciting time to have Parkinson’s.” On some online forums, Michael encourages other patients to participate in clinical research. He admits that he’s lucky, and that his five medications keep his symptoms mostly at bay.
As a registered nurse, Michael’s wife Sherri said she knows they’re lucky to be so close to Cleveland where so many trials are taking place. “His faith is very strong,” she said. She’s excited that her husband is participating and hopes he’s part of the cure. “I want to be involved in that and make that happen,” he added.
Though they may not yet understand the scope of what their father is doing to help find a cure, Michael’s children are sure to ask how the trials are going and how each one is helping. And one day, they’ll begin to understand.
Join Michael and over 28,000 other volunteers to accelerate research toward a cure by registering to learn more about the PD clinical trials in your area at www.foxtrialfinder.org today.
Kate Harmon is a guest blogger for FoxFeed and profiles members of the PD community who have participated in clinical trials when she's not working as a newspaper editor. Her father has Parkinson's and her entire family is involved in the fight. Check out their family blog for more of these PD warriors, www.pcrfinc.com.