Doctors gave the official diagnosis — Parkinson’s disease — nine years ago, when Van Heukelem was 60 years old. He wasn’t particularly surprised by the diagnosis.
“My mother had Parkinson’s, so I started to suspect it,” Van Heukelem said.
A progressive neurological disorder of the nervous system, Parkinson’s affects movement. About 500,000 Americans have been diagnosed with it. The disease causes tremors as well as slowing or freezing of movement.
A marine biologist living in Maryland at the time of his diagnosis, Van Heukelem faced the usual progression of symptoms, from tremors to rigid muscles. By 2004, he lost the ability to write.
In 2007, Van Heukelem and his wife, Laurie, moved to the Black Hills to be close to their daughter, Lynne Loverich, a physical therapist at Custer Regional Medical Center.
Van Heukelem’s symptoms continued to progress. He began to drag his right foot. His face became more mask-like, unable to show elaborate emotion.
Other than oral medication, Van Heukelem was given few tools to manage the disease and admits it was hard to keep a positive attitude, especially when he remembered his own mother being bedridden from the disease.
“Having to watch my mother go through it,” he said, “I knew what was coming.”
Then, earlier this year, the Van Heukelems heard about a program called Exercise4BrainChange through the NeuroFitNetworks in Arizona. Based on the theory that specific exercise could help the brain slow the progression of Parkinson’s, the program strives to educate physical therapists and fitness trainers around the country.
The couple attended a weeklong Exercise4BrainChange retreat in May. Van Heukelem came back with better posture, a steadier gait and an attitude that he now has something in his arsenal to fight his disease.
“I noticed his posture was better. His spirits were up,” said Loverich, who decided to train in the Exercise4BrainChange philosophy.
She will attend a conference in Denver this month, joined by Laurie Van Heukelem, who was equally thrilled with the progress that her husband made in the retreat.
“Within five days, I had difficulty keeping up with Bill walking at my normal pace,” she said. “It’s kind of like they’re recalibrating their body.”
Van Heukelem now walks at least 30 minutes a day using walking sticks, which help to straighten his back.
Exercise4BrainChange was created by Becky Farley, a physical therapist and neuroscientist from Tucson, Ariz.
Farley said at one time, doctors and scientists believed that exercise offered little help for Parkinson’s sufferers. Even today, few newly diagnosed Parkinson’s patients get referrals for rehabilitation or physical therapy. A growing collection of research suggests they should.
Scientists from the Harvard School of Public Health, University of Pittsburgh and University of Southern California found in studies that exercise can actually slow the progression of the disease.
The Parkinson’s Disease Foundation reports that “more research is needed to understand which aspects of exercise are most important, whether the benefits are long-lasting and whether drug and other therapies influence its effects. In studying the underlying molecular mechanisms, we may find new targets for drug therapies. In the meantime, we know the following: Intensive exercise can help people with PD walk and move more normally, and research is beginning to reveal how it reconditions the underlying brain circuits.”
The Exercise4BrainChange program takes off from that very philosophy.
Farley said specific exercise helps to improve neuroplasticity of the brain, enhancing the brain’s ability to reorganize itself and form new neuro-connections.
“Every time you learn a skill, it changes the brain,” she said. “We know you can change the brain in a person with Parkinson’s.”
Exercise also helps the brain to utilize the dopamine in the Parkinson’s brain more efficiently.
“Exercise is good for everybody, but when you have a neurologic disease, it’s 300 times more important,” Farley said.
“Based on research, it looks like it should be the very first thing done,” Van Heukelem said.
The problem is that little infrastructure exists for Parkinson’s patients, Farley said. In Tucson, the NeuroFitNetworks has established gyms where Parkinson’s patients can develop exercise programs and work out with other Parkinson’s patients.
Elsewhere, such facilities don’t exist.
The Denver training that Loverich and Laurie Van Heukelem will take is one step in making such program accessible across the country, Farley said.
“We are looking for sites. We would like to partner with hospitals,” she said. “When people with Parkinson’s start … requesting … they will make a difference.”
Loverich looks forward not only to learning better treatment options for people with Parkinson’s, but also helping to train other physical therapists in the area to do the same.
“I feel it will help me with my treatments of people,” she said.
While Laurie Van Heukelem doesn’t plan to formally teach Exercise4 BrainChange programs, she is willing to offer tips and advice. Her hope is that fitness trainers and physical therapists in the community will see a need for such facilities and step up.
“Really, I want to be an instigator,” she said.
For more information about the Parkinson’s disease exercise program Exercise4BrainChange at the NeuroFitNetworks, go to www.nfnw.org/ or call 520-591-5821. To reach Laurie Van Heukelem, call 348-4787.
Contact Lynn Taylor Rick at 394-8414 or firstname.lastname@example.org.