Trail Moments: Jack Perme’s Journey to Help Others With Ataxia
“The freedom to be able to go places and do things for myself is something that I love about my trike.”
—Jack Perme
Anyone seeing Jack Perme cruising down the trail this past summer, pedaling his trike with a huge smile spreading across his face on an adventure from Maine to Ohio, might not realize just how special this moment was.
“It was very liberating, because I had to stop riding bikes when I was about 12 or so because I just couldn’t balance anymore,” Jack recalled. “Now that I have a trike, I don’t have to worry about balance at all because of its three wheels.”
As a kid, Jack didn’t realize that something was off about his body. Being clumsy and bumping into walls or family members was just his normal. Sometimes it was attributed to other things, like a need for glasses. It wasn’t until 2016, when he broke his nose and a CAT scan after the accident revealed an atrophied cerebellum, that he learned that something was really wrong. Over the next few years, further testing uncovered a repeating sequence in his genes that was causing ataxia, a disorder of the nervous system. There was no cure. Jack was just 22.
This article is part of Rails to Trails Conservancy’s Trail Moments initiative—to elevate new and tried-and-true trail voices around the country, and how trails impact the lives of Americans. Learn more at trailmoments.org, and use #TrailMoments on social media to share your story.
A New Direction
“Ataxia means a lack of coordination and balance,” explained Monica Perme, Jack’s mother, whom he lives with. “You can have ataxia from a number of different conditions. In the genetic case, the cerebellum, the part of the brain that is responsible for any movement from the body—including eye movement, swallowing and speech, and fine motor and gross motor skills—that part of the brain atrophies. It just continues to get smaller, and that’s what causes the progression of the symptoms.”
A silver lining was that another man living near them in Downingtown, Pennsylvania, had the same rare condition (which affects roughly 150,000 people in the United States) and introduced Jack to recumbent trikes. It changed his life.
“Jack’s symptoms progressed very rapidly in the first year after his diagnosis, and he was actually using a wheelchair full time,” said Monica. “After he started riding his trike, he was able to walk again for short distances and got stronger. Now he walks using a walker, and he’s not using a wheelchair at all anymore. His doctors are amazed at Jack’s spirit and determination, because this is a progressive illness, and it’s unusual for somebody’s progression to go in the opposite direction.”
The Permes shared that there are many organizations across the country that provide the opportunity to try out recumbent biking without having to buy a trike, such as the Pennsylvania Center for Adaptive Sports, which is the group they started with, and Move United, which has a listing of adaptive programs by state and sport. During their Maine-to-Ohio ride, the Permes also met up with Waypoint Adventure in Massachusetts and liked them so much that they returned the following October to donate Jack’s trike to the nonprofit, which provides outdoor experiences for people with disabilities.
Now Jack rides his trike nearly every day. He likes the lushly wooded Struble Trail, which is only about a mile from his home, and the Chester Valley Trail, which he can pick up in nearby Exton that, in turn, connects with the expansive Schuylkill River Trail traveling all the way into Philadelphia.
“The freedom to be able to go places and do things for myself is something that I love about my trike,” said Jack, who lost the ability to drive. “Without this, I would just be stuck at home. It’s my mode of transportation. I use my trike to go to the grocery store, or to the gym, or to go out to eat.”
Helping Others With Ataxia
The multistate trip that he took with his mother through August and September of 2024 spanned 1,455 miles and was about testing his limits even further. “It gave me the knowledge that I can do something like this. I wanted to prove to myself that I could.”
Together, they primarily followed the East Coast Greenway, but detoured from the route to visit a recumbent conference in Ohio. For Monica, the experience was a challenge as well. “We weren’t sure that either one of us could make it. I’m 62 years old and I’ve always been active, but I wasn’t a bicyclist at all. Jack got me interested in trikes shortly after his diagnosis. He had to give up all the other things that he used to like to do, like woodworking, but found out he could ride a trike, and he was really excited about it. So I bought myself a trike, and we just started on local trails around here a couple of miles at a time, and built up to doing more.”
Although the gravel parts of their journey were difficult due to the trike’s narrow tires, the mother-son duo especially enjoyed the wide, well-maintained trails, like the famed Great Allegheny Passage (gaptrail.org) and Connecticut’s Hop River State Park Trail.
“There were so many nice experiences that we had,” said Jack. “But the best thing was just meeting people—and getting to share our story with everyone.”
The trip presented the opportunity to raise awareness and funds for others with the disorder. Through his online Moving Forward campaign, Jack has amassed more than $32,000 in donations, enough to buy custom trikes for nine other people with ataxia that Jack and Monica selected from around the country.
“We thought that it might be difficult to find enough recipients because of how rare the disease is,” said Monica. “But it turns out there was so much interest and so many applications—more than 20—that we have been very busy just accepting and reviewing applications. Now that we know how many people are interested in it, we’re motivated to keep on doing this.”
The Catrikes that the Permes are purchasing will be provided through the help of a local family-owned business, Lancaster Recumbent. They will be building the trikes for the recipients who live nearby, or working with other trike dealers for the recipients who live farther away. Jack and Monica have now met all the recipients by Zoom and will be traveling to their hometowns to ride with them when their trikes are delivered.
“Jack is a perpetually positive kid, and at first, the doctors didn’t think he really understood what they were telling him about his diagnosis, but he gets it,” Monica said. “He just sort of shoulders it and says, ‘Well, you know, what can I do about it? I can’t change it, so maybe I can help somebody.’”
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