Living With Parkinson’s: A Quest to Make Hiking Accessible
Key takeaways:
Bill Meyer spent a lifetime exploring the mountains, but those adventures stopped when he developed Parkinson’s disease.
A treatment called “deep brain stimulation” gave Bill a new lease on life and reignited his passion for hiking.
By offering supported trips through a nonprofit he started, Bill’s now making the trails accessible for others living with Parkinson’s.
Bill Meyer is the quintessential mountain man. He’s a lover of the outdoors whose enthusiasm for trekking through breathtaking landscapes is surpassed only by his joy at making those experiences accessible for others.
But Bill, 69, almost lost that core part of his life when he was diagnosed with Parkinson’s disease in 2009. He knew something wasn’t right when he began experiencing intense muscle stiffness, impaired movement, and a loss of strength that all got worse over time.
Then, the trembling began.
Need help getting GOCOVRI?
$20* Co-pay Assistance Program for commercially insured patients
If you don't have insurance, your insurance doesn't cover GOCOVRI,† or if you can't afford GOCOVRI, the Patient Assistance Program may help you get GOCOVRI at no cost.
*Terms and conditions apply.
†Financial and medical eligibility requirements vary by organization.
“When my tremor started, I'd already come to the point where I couldn't do my job anymore,” says Bill, a former contractor and home inspector. “I couldn't bend. I couldn't crawl into places I usually got to, and my stamina was just not there.”
A lifetime of adventure nearly cut short
For decades, Bill had hiked, rafted, skied, and fished his way across the Pacific Northwest, Colorado, and Alaska. Family holidays with his children and getaways with his wife took place against a mountain backdrop. And his friendships were built in the fresh air.
But outdoor adventures seemed like a lifetime away as Bill struggled with the day-to-day. A visit to a chiropractor for his back pain eventually led to a neurologist appointment. And that, finally, led to an explanation: At the age of 57, Bill was diagnosed with Parkinson’s disease.
“I was devastated,” Bill says. “I had no idea what was going on and I was taken by surprise.”
Parkinson’s disease is a progressive nervous system disorder that affects movement and balance. And while there are treatments to help with the symptoms, there is no cure. Bill received his diagnosis in 2009. But he had been experiencing symptoms for years — symptoms that continued to worsen over time even after the diagnosis.
“My tremors gradually got out of control,” he says.
For years following the diagnosis, Bill’s life was turned upside down. It became a struggle for him to leave the house or do everyday tasks, let alone trek the hundreds of miles he used to cover in the wilderness.
A life-changing brain surgery
In 2015, Bill decided to take a different treatment route and try deep brain stimulation (DBS). The surgical procedure involves placing small electric devices in the brain. These devices produce electrical impulses to help stimulate brain function and treat the motor (movement) symptoms of Parkinson’s disease.
“Before DBS surgery, I didn't want to go out of the house, and I was getting depressed,” Bill says. “But DBS changed my life. It turned me around and gave me new life.”
His tremors slowly went away, his medications were cut in half, and his movement improved. Suddenly, Bill had a world of possibility open back up to him. So, of course, he planned a trip back to the mountains: a 4-day backpacking adventure with his wife and some friends.
“It was invigorating to get back in the mountains,” he says. “It was a terrific hike.”
Bill soon turned his focus to making hiking and backpacking accessible for others living with Parkinson’s disease. And, in 2016, he co-founded Pass To Pass. The nonprofit provides opportunities for people with Parkinson’s disease to explore the backcountry by organizing treks with volunteer support hikers and pack animals to carry gear. The organization also raises awareness about Parkinson’s disease and promotes the benefits of exercise for symptom management.
When Bill first started hiking again after his surgery, he found that carrying a heavy pack was one of the biggest challenges. He struggled with all the gear. So he needed to customize his rucksack to make room for the wires and batteries he now has, which was a result of his DBS surgery.
“I just had to figure out a better way to do it,” he says. ”So, we came up with the idea to use horses.”
But horses weren’t quite the right fit. They were expensive to work with and couldn’t navigate all the trails. So, for the second year of his group’s trips, the group turned to llamas.
“We've been using llamas ever since — they're real lovable creatures,” Bill says. “They're a lot better on the environment than horses, and we can work with them ourselves. We don't have to necessarily have a wrangler.”
Every hiker with Parkinson’s is also accompanied by a volunteer support hiker — like a family member, friend, or someone in the organization’s community. The trips’ degrees of difficulty range from a couple of days in easier terrain to more than a week in challenging areas.
“We’ve had hikers from all over join, and every year it gets bigger,” Bill says.
Last year, 27 hikers with Parkinson’s and 32 support hikers participated in 7 hikes spanning nearly 2,000 miles. Bill is expecting even larger numbers to turn out for the 8 hikes planned this summer.
Finding community, achieving bucket-list goals
Nearly all the trips they organize are along the Pacific Crest Trail, which spans thousands of miles between Mexico to Canada through California, Oregon, and Washington. This year, trips are planned in all three west coast states.
“The Pacific Crest Trail is kind of the granddaddy of all trails. It’s iconic,“ says Bill, noting that it’s a trek on many people’s bucket lists.
Aside from ticking off a wish-list trip, a big part of the draw for the hikers is finding a community of people living with Parkinson’s disease who share similar outdoor, active interests. Having a support group is absolutely crucial, Bill says, and it doesn’t have to revolve around the mountains.
“There are people out there to help — if not with hiking, [there are] boxing programs, dance programs, singing programs. There are all kinds of support groups,” he says. “You don't need to sequester in a closet.”
Why trust our experts?
