Llamas, Yes Llamas, Help Hikers With Parkinson’s Get Outside. Here’s How.

It was so strange. After decades as a confident skier, Sandy’s left turns became ragged. When she fell, she needed help getting up. The following year, I thought my hearing was going: when she spoke, I had to move close to understand. Then in 2015, Sandy developed a tremor. She was 57. What’s wrong with my wife? 

Today, over one million Americans have Parkinson’s Disease (PD). It’s not just seniors, too. Those under 50 have their own acronym: Young-Onset Parkinson’s Disease (YOPD). How many are backpackers? Taking into account how many backpackers there are in the U.S. and the prevalence of Parkinson’s, I calculate about 50,000. Surprisingly, only one program exists for backpackers with Parkinson’s. This year, that organization, PassToPass, has run 13 treks for 63 Parkinson’s hikers. 

On a trek this September, my wife, Sandy, was one of those hikers.  

“I’m pregnant,” Deb Proskurniak told her husband Michael. Days later, still aglow, Deb accompanied Michael to a doctor appointment at Rockefeller Center. Right after, Deb was meeting her father to share the good news. Busy with their 2-year-old and work, Deb hadn’t noticed Michael’s left pinkie jerking randomly. When Michael’s general practitioner advised him to see a neurologist, they considered it routine—a “check the box” non-issue. Receiving the diagnosis was a shock. Deb’s first thought was: I only know one thing about Parkinson’s. Michael J. Fox has it. After the appointment, the words were ash in Deb’s mouth: “Dad,” she said, “I have good news and bad news.” That was 19 years ago. Michael was only 40 years old. 

Bill Meyer was a consummate outdoorsman, a backpacker and rafter. Married 36 years, he and his wife, Nadean, had spent their honeymoon hiking 800 miles of the Pacific Crest Trail. In 2009, Bill had been a Spokane home inspector for 25 years, squeezing in and out of crawl spaces with ease. Then he couldn’t. Bill’s chiropractor told him: “I can’t treat you. You need to see a neurologist.” Bill was 57. He says today, “My chiropractor already knew what was wrong.”

The three quickly learned that Parkinson’s is an indiscriminate thief. Beginning decades before diagnosis, Parkinson’s had been stealing their ability to generate dopamine, a critical brain neurotransmitter. Each felt so alone. Teams of specialists didn’t rush in with treatment plans as with cancer diagnoses. Instead, like most PD patients, they heard: “See me again in four to six months.” No messages of hope, no focused plan, nothing. 

There are lists of 15, 20, and even 40 potential Parkinson’s symptoms. Speaking at low volume—it wasn’t my ears, it was Sandy’s voice. Rigidity and stiffness—Bill’s crawl space difficulty wasn’t just from getting older. Vivid dreams, shouts in bed, constipation, loss of balance, freezing in place, tiny handwriting, mood swings, compulsions, hallucinations, paranoia, and of course, tremors—Michael’s pinky, Sandy’s left arm, and Bill’s arm and bobbing head.

“Nadean,” Bill said, “don’t tell my family or friends. Tell them the tremors are the side effect of meds.”

Today, two medical treatments exist. Dopamine replacement is nearly universal. Much less common, but becoming more so, is a surgical brain implant, Deep Brain Simulation (DBS).

But the most positive intervention isn’t through pills or a scalpel. It’s exercise. Dance, yoga, boxing, bicycling and, what else? Walking. Especially walking outdoors. Backpacking. 

Backpacking was one of the first things Bill lost as his tremors ramped up. Moving over logs and tricky terrain became too difficult. Five years after diagnosis, Bill chose DBS surgery. It’s a bit of a crap shoot with about a 75 percent success rate in reducing symptoms. For Bill, it worked. When the implant electrodes switched on, his balance returned, his tremors eased. Can I backpack again? He piled gear and hopes into his old backpack. 

DBS electrodes are implanted in the brain, but the battery modules are implanted in the upper chest. As if “X” marked the spot, the battery packs were where Bill’s pack straps pressed the hardest. His gear went back on the shelf.

Seeking an alternative, in 2016 Bill and Nadean founded PassToPass (PTP), a nonprofit that helps hikers with PD return to the trail. In 2017, the PTP took four PD hikers on a six-day trek. The secret sauce, for them, was llamas. The bulk of each PD hiker’s gear rode in a llama pannier. 

Over the next four years, PTP’s schedule grew from one annual trek to seven. Each of those summers, Bill spent nearly a week in his beloved Washington Cascades. 

This year, Sandy applied for a coveted PTP slot. (Most are claimed many months in advance of the trip itself.) I could come as her supporter. Entering its 10th season, PTP had branched out, expanding from one-size-fits-all, six-day treks. Offerings now included “Black Diamond” treks with no animal support, moderate “Basecamp” treks where the llamas brought the gear in and out and there were dayhikes in between, and finally, non-backpacking, lodge-based trips with hikes every day. One thing hadn’t changed: Since its inception, all PTP treks were free.

But for Bill, the founder, Parkinson’s had fleeced him again. When Sandy and I flew from Maryland to Washington for our trek this September, Bill hadn’t been on a PTP excursion in four years, not since 2021. 

PTP brought nine of us together: Sandy and me, Deb and Michael, and five from all corners of Washington state. Lori with PD came with her daughter Laretta, and Dawn with PD would be supported by the trek leaders, Karin and Eric. And of course, there were llamas. Meeting the llamas for the first time outside of the small town of Cle Elem, Washington, Deb asked the burning question: “Can we pet them?” 

The llamas’ owner, Charley Rosenberry, has supported a dozen PTP treks. From the first one he has refused any payment. Rosenberry answered Deb: “You can pet them. Do it gently on their necks.”

The first morning we were met by a bruised apricot sun. This is the Cascades, one of North America’s premier mountain ranges, but we woke to smoke. The Wildcat and Rattlesnake fires burned out of control. Though far off, they had forced a destination change. We’d head to a new basecamp, Pete Lake; it would mean a shorter hike, less elevation gain, and less dark haze. Our “Basecamp” trek was going to be even more moderate. But that opened a door we thought was slammed shut. After a four-year absence, Bill Meyer was going to go out with us. He’d finally be back in his Cascades.  

The 4.5 miles to our basecamp took us nearly four hours. Nestled in a basin, Pete Lake sits at the headwaters of the Cooper River. Above us was a jagged line of peaks, the tips rising 4,000 feet above our heads. Even through a smoke veil, the scene could be straight out of the Italian Dolomites or the French Alps. 

On the second day, eight of us hiked to Waptus Pass and Escondido Lake, 8 miles and a 2,000-foot climb. Bill and Dawn stayed in camp. That’s one beauty of the “Basecamp” treks. There’s the option to stay put. As usual, I hiked behind Sandy, just like on our 2007 thru-hike of the Pacific Crest Trail. Sandy’s 20-mile days were behind her, her hiking poles now a must, not a casual addition. But her spirit remained. A year ago in Italy’s Dolomites, her mantra on steep trails with no switchbacks was: “I’m 65, I’m short, and I have Parkinson’s. Cut me some slack.” 

By the second evening, sitting lakeside on llama-carried camp chairs, Sandy and I had spent more time with Parkinson’s folk and caregivers than at any point since she was diagnosed. “Six minutes,” Michael announced. “That’s how long it just took me to put on my watch.” How does Michael do it? Later Bill mentioned how frustrating typing had become. It rang so true to me. Sandy’s typing was reduced to one good hand and only the index finger on the other. Michael joined in, “Parkie typing is two keys forward and one key back.” Is humor how Michael copes? 

Later Michael confided to Sandy and me, “What gets me through my days is my kids.” Since that day when Deb was pregnant, the 2-year old girl has grown to be a successful college senior and that boy in the womb is starting his college sophomore year. “And without Deb,” Michael added, “I would be completely lost. I love her so much.”

I noticed that every time Bill rose to get out of his chair, our leaders, Eric and Karin, started to rise, too. Each time one moved to steady him. I soon joined to make it three of us, unspoken, taking turns. One night I walked Bill back to his tent. This strong, vital man, who once had the trail name Bull Dog, needed me to change his socks, get him ready for bed. “This is so humbling, Barney,” he said to me.  

Will I someday do this for Sandy? 

The third night brought an hour-long gully washer, machine-gun rain, thunder jammed on top of the lightning. Sandy and I whooped and hollered snug in our tent.

The next morning Pete Lake was dolled up. The gray veil of smoke had lifted, the mountains wore crisp granite capes, sides hung with glacier jewels. The finery had come out just in time. 

On the final day, Lori told us that she’d been a 911 dispatcher before Parkinson’s descended with memory loss and brain fog. She had to quit her job. She’d become more and more uncomfortable meeting anyone new. She’d been scared to come on this trip. 

Now, with her daughter Laretta by her side, Lori turned to Bill and said, “I’m hooked on this.” Deb joined in: “Bill, what you’ve done with this organization is incredible. I can’t thank you enough.”

PTP’s success relies on volunteers. Karin and Eric, the leaders of our trek, are just two of PTP’s phalanx, all ready to help at their own expense. One is Rosemary Gallagher, a New York Institute of Technology physical therapy professor with 30 years clinical experience. She lives and breathes Parkinson’s…or so she thought, until her first PTP trek. That week backpacking drove home that in the clinic, “we don’t see them in their day-to-day lives, but out backpacking, I got to live with them for a week and see firsthand their challenges on a day-to-day basis,” she says. “It’s changed for the better how I’m able to to help those with Parkinson’s and their caregivers.” 

The last morning, I was up before 5:30 a.m. Bill and Dawn were heading out at 6:30 with Karin, two hours before the rest of us. We all wanted to reach the trailhead at the same time. I helped Bill get his gear ready for the llamas. 

On the final hike out, I chatted with Eric. He’s in his 70s, a few years older than I, still a strong hiker. In a lull, I thought about Bill, how he’d fallen on the hike in and on the hike out. He was more than slow, he would sway, unsteady even on flat terrain. He had consulted his physical therapist when he heard about the basecamp change to get clearance to try. Eric, as if he’d read my mind, expressed out loud what I’d concluded: “Barney, I think this may be Bill’s last trek.” 

Back at the trailhead, we were treated to a groaning-board lunch, took a final group photo, and gently stroked the llama’s necks one last time. 

Back home, I posted trip photos on social media and quickly heard from an old friend, Linda April. “Barney!” she wrote, “I’m truly excited about this.” 

Ten years diagnosed, Linda April had hiked with meetup groups in Portland, Oregon. But her pace had slowed: “I can’t keep up. … It’s so hard to have the skills you love taken away.” When she heard more about PTP, she gushed, “an epic hike at my own speed in a gorgeous part of the US with llamas, no less. It gives me goose bumps writing about it.” (What Linda doesn’t know is that I’ve been asked to lead a PTP trek next summer. My hope is that she will come along.)

As I now think back on our trek, I often return to that night when my hands pulled thick wool socks onto Bill’s calloused feet. Parkinson’s has robbed him of so much. But there was one thing it hasn’t taken, and never will. Bill Meyer is indomitable. Maybe next year on the trip that I lead, with strong backup, I’ll encourage Bill to come out with us again. 

Yes, I know PTP accommodates a bare sliver of Parkinson’s backpackers. But I also know that Parkinson’s premier exercise program, Rock Steady Boxing, started with only six participants 19 years ago, the same year Michael was diagnosed. Today, Rock Steady Boxing has nearly 50,000. That number is the same as the estimated number of Parkinson’s backpackers. It happened to Rock Steady Boxing. Just maybe it can happen to PassToPass.

To learn more about PassToPass, to participate, volunteer, or donate, see their website: passtopass.org