The past few months have been a whirlwind for Charlotte-area hiker Matt Vilardebo. After hiking part of the Appalachian Trail in April, he gained a wealth of perspective that helped him navigate his new normal with early-onset Parkinson’s disease. He has also gained community, something he craved after he was diagnosed.
Thanks to social media, an interview with “The Today Show“ and the response he received this past spring from hiking the Appalachian Trail, he’s not only learning how to find his way but he’s accomplishing one of his goals.
“I am a lot more active on social media with the Parkinson’s community,” Vilardebo said. “It definitely allowed me to get the reach. I was hoping to be able to form an online support group with young-onset Parkinson’s patients.”
In fall 2020, Vilardebo didn’t feel like himself. After developing a tremor, he went to see a doctor. He was diagnosed with Parkinson’s disease at 47, becoming one of about 60,000 Americans diagnosed with Parkinson’s each year.
While the diagnosis at any age can be overwhelming and difficult to navigate, Vilardebo found this to be even more true for early-onset Parkinson’s patients, for which there are minimal resources. According to Parkinson’s Foundation, it’s estimated that 4% of people with Parkinson’s are diagnosed before age 50.
Vilardebo’s diagnosis was unexpected, but it eventually motivated him to “go big or go home” when it came to many aspects of his life. He took this mindset with him as he attempted to hike part of the Appalachian Trail alongside fellow hiker and Parkinson’s patient Dan Schoenthal. Before the hike, the Fort Mill, S.C., man spent months training, exercising and hiking. While the overall experience was life-changing, he didn’t receive the desired outcome.
“I got out there, and it was just quite difficult,” he said. “It really kicked my butt. It was a very unique experience where you learn a lot about yourself out there. I really kind of pushed myself beyond my limit.”
Vilardebo originally planned to stay on the trail for nine days. He made it seven days, which was tough for him. Not being able to meet his goal of hiking nine full days was emotional because of the community he started to build with Schoenthal and the people he met along the trail.
“I just physically couldn’t continue,” he said. “I had to come off. I fell down a lot out there, and I wasn’t as prepared as I thought I was. That’s why I ended up in Rock Steady Boxing to kind of stop that nonsense.”
Though he struggled, there were many bright spots from the experience. Spending time with Schoenthal and seeing other hikers was great.
“I would say that out of everything, out of every view I got to have, out of every person I met, every bit of time on the trail, the time I got with Dan was one of the greatest things that’s happened to me,” he said. “It’s like my Parkinson’s life has its own top 10. So, I would definitely say that’s a top five moment for me with my post-Parkinson’s diagnosis.”
Getting back out on the Appalachian Trail
Vilardebo continues to remain committed to staying active and training, which is where Rock Steady Boxing comes into play. It’s boxing that empowers people to fight back, literally and physically. Vilardebo is a new fan of the non-contact boxing fitness lessons. Since April, he has added boxing to his regimen with plans to get in better shape, lose more weight and tackle the Appalachian Trail again this fall. This time, he’s going at it alone.
The goal is to start at the Appalachian Trail Southern Terminus in Gilmer County, Georgia, to hike the Georgia section of the trail in nine days. Preparation will be different this time, however. Pacing and hiking with weight are priorities, and a recent birthday hike at Mount Mitchell — the highest elevation east of the Mississippi — served as practice. He hiked the ridgeline of Mount Mitchell in four hours, driving to the top and hiking the peaks.
“I was really proud of that, and I was able to raise several hundred dollars for the Parkinson’s Foundation,” Vilardebo said.
Vilardebo collaborates with both the national and North Carolina chapter of Parkinson’s Foundation. Since hiking the Appalachian Trail, he’s had the chance to work more closely with the Parkinson’s Foundation, helping with social media.
His biggest cheerleaders
Through it all, Vilardebo’s family — his wife and two teenagers — have been present, supporting him every step of the way, even hiking with him on a recent family vacation to California. Vilardebo and his wife, Elida Westerman-Vilardebo, recently celebrated their 20th wedding anniversary.
Westerman-Vilardebo wasn’t in constant communication with her husband during his time on the Appalachian Trail, but she kept up with him on social media and in the news. Aware of some of his struggles along the trail, she worried but always remained supportive while starting to realize “go big or go home” isn’t as realistic for Parkinson’s. Setting small goals along the way is more attainable.
“It wasn’t easy,” Westerman-Vilardebo said. “He was struggling to get through some of the hikes and things like that, but I also know it’s the process he has to go through. I’m glad he learned something, and it’s made him reflective. It taught him about his own limitations and gave me some perspective about his limitations.”
Westerman-Vilardebo admits that sometimes it still slips her mind that her husband has Parkinson’s. She’s learning to be more mindful when asking him to complete everyday tasks — such as fixing household items.
“We have been together 20 years. He’s always been the go-to kind of guy, and he’s been capable of these things.”
As Vilardebo prepares for his hike this fall, his family is proud and he chooses to focus on the bright spots in his life. He’s content with his work and his Mount Mitchell hike, he has a strong family foundation, and he’s building a strong system of support within the Parkinson’s community.
“My symptoms have not progressed or worsened,” he said. “I guess you can say I’m in a maintenance phase. I feel great healthwise. I have a good life, I can’t lie.”