New Parkinson’s patient heads out to hike the Appalachians

Arguably, the most interesting aspect of hiking is the scenery. It’s pretty difficult to match unobstructed views of nature in its purest form. The views of the mountains, trees, wildlife and streams of water are truly breathtaking. While some of us can gaze at what’s ahead, never missing a beat, for hiker Matt Vilardebo — who loves looking around during his hikes — it’s an entirely different process.

Vilardebo has to ensure he’s not stepping on his left foot and it isn’t dragging behind him.

“I always said I wish I could make a GoPro video and put it on my head so people could see what I look at,” he said. “It’s down by my feet usually the whole time. Then, when I stop, I’ll actually look up and enjoy the view, really just soak it in.”

In fall 2020, Vilardebo felt something wasn’t right. He developed a tremor and immediately thought a pill would suffice and everything would be OK. Perhaps the symptoms were the result of his work environment, which sometimes takes him to locations like coal power plants, copper mines and battery recycling facilities. A visit with the doctor would prove otherwise, however. He was diagnosed with Parkinson’s disease.

Denial, then sadness, anger and rage followed, along with the realization that he had to go through all of those steps.

“I was really shocked because I didn’t think I had Parkinson’s,” he said. “I worked in hazardous environments most of my life, so I thought maybe it was just some chemical exposure. Then, of course, having a grandfather who had had it, that’s the first thing that came flooding into me. It’s like everything at once that you could imagine when you get news like that.”

A life-altering diagnosis has the ability to take a toll on any individual during a “normal” year. Vilardebo’s experience was — and is — amplified due to the coronavirus pandemic, however. As a whole, it has been a very isolating experience for someone who craves human interaction, loves being around people and is a hugger.

“I feel all alone because it’s my diagnosis,” he said. “Then, the pandemic just multiplied that by about 100. I would like to participate in support groups and therapy, but I just don’t feel it will benefit me via Zoom.”

Parkinson’s: ‘An older person’s disease’

Vilardebo is one of approximately 60,000 Americans diagnosed with Parkinson’s each year. Though the occurrence of Parkinson’s increases with age, it is estimated that 4 percent of people with it are diagnosed before age 50, according to Parkinson’s Foundation.

Vilardebo’s diagnosis came at the age of 47. To his disappointment, there was a significant lack of resources for early-onset Parkinson’s.

“It is traditionally an older person’s disease,” he said. “It’s kind of hard to see somebody in stages of Parkinson’s when you’re kind of early in it and you’re young. It’s hard to find support groups.”

Living with the disease

At first, his priority was getting symptoms under control. Symptoms that typically include tremors, difficulty with moving and walking and small handwriting. These days, he’s focused on prioritizing his mental health.

“I struggle a bit with some anxiety-related issues,” he said. “So, that became a bigger priority for me. Right now, I’m trying to navigate getting some mental health care, getting somebody to talk to help me navigate some of these newfound anxiety issues.”

Parkinson’s is a progressive disease, but he has time, which gives Vilardebo hope for himself and others who have been diagnosed.

“I don’t have time to wait on anything anymore,” he said. “So, don’t get stuck on feeling sorry for yourself. Things happen; we gotta deal with adversity as its deals with us. I’m not about to just lay down and give up for Parkinson’s. For all I know, we’ll find a cure before this ends up getting difficult for me. I just try to stay positive. I guess that’s the way I try to spin it.”

Hiking the Appalachian Trail

Vilardebo is no stranger to the outdoors or hiking. He’s increased his level of activity since the diagnosis, however. Now, the plan is to take it up another notch as he prepares to hike part of the Appalachian Trail.

“I’ve never done anything like this in my life,” he said. “I’ve gone camping and things like that, but I’ve never put everything I need to survive for a duration of days into a backpack and head out into the wilderness. I’ve had a lot of great experiences over the past couple of years living and working in the Middle East. So, it’s been a lot of self-discovery for me recently. I feel like it’s just more of that.”

He won’t be doing it alone. Vilardebo was inspired by hiker Dan Schoenthal’s story following his own Parkinson’s diagnosis and attempt at the 2,200 mile hike through the Appalachian Mountains last year. So, Vilardebo reached out to him. The two became fast friends (virtually) and are excited to meet for the first time at the start of the hike, which coincides with Parkinson’s Awareness Month.

The plan is for the two to meet at Allen Gap Trail in Tennessee on the morning of April 3. Due to work obligations, Vilardebo will hop off the hike after about 10 days, but his plan is to then rejoin Schnoenthal, who is hiking straight through (it’s about a six-month journey).

After losing 25 pounds and training for months, Vilardebo is ready for the adventure he’s dreamed about since he was a Boy Scout. An eight-mile hike before lunch isn’t unusual. His time on a recent hike on the Grandfather Mountain Profile Trail blew his aunt and uncle away. The 3,000-feet elevation climb — during a wintry mix — was 7 miles up and down.

“I was super proud of myself,” Vilardebo said. “I was on the trail by 9 a.m., and I was in the parking lot by 12:30 p.m.”

Hiking the Appalachian Trail was always something Vilardebo’s colleague Chris McAfee wanted to do.The two men share a professional and personal connection. McAfee is the project manager for the Walter Reed Army Institute of Research — a customer of Valiant — and National Museum of Health & Medicine. As a Valiant contractor, Vilardebo supports Walter Reed’s Reliability Centered Maintenance program on campus.

McAfee said he cracked a huge smile when Vilardebo told him his plans.

“I thought that was pretty outstanding that he was dedicating the time to take a break and do this and have that be a part of his story working through Parkinson’s disease and the outreach associated with all of that,” McAfee told CharlotteFive. “It’s just an awesome thing. We’re really supportive of everything he’s doing and he’s making big things happen in a really cool way.”

Support from his wife and two teenagers

Vilardebo’s wife, educator Elida Westerman-Vilardebo, echoes McAfee’s sentiments. As a wife, she’s hoping he will be successful and is also, understandably, a bit worried.

“This is a whole new venture for him, but we’ve been through other challenges,” she said. “He’s met them head on and really made us proud but now he’s dealing with the Parkinson’s, so that’s just another layer of this challenge.”

As expected, the Vilardebo household had to make some changes, she said. Their children — who are 18 and 15 — support by helping out more around the house.

“Despite the diagnosis, we’ve tried to keep it stable,” she said. “Luckily, our kids are older and able to help out with everything, but there is a sense of worry and a sense of the unknown. We are just trying to take it one step at a time and take these things as they come. It’s a process. It’ll be one day at a time — we’re taking it that way as a family.”

He feels like he’s doing it for his grandfather, who also suffered from Parkinson’s, Westerman-Vilardebo said.

“He was super close to his grandfather,” she said. “So, I think he also feels like he’s doing it for him, as well. It’s a way for him to connect with a very important part of his childhood and past and honor his grandfather through this process, as well.”

More details about Matt Vilarbedo’s Parkinson’s journey

For more information about Vilardebo and his journey, view “A Ginger’s Parkinson’s Journey” Facebook group page.

For more information about how to support Vilardebo’s efforts, view his personal Team Fox For Parkinson’s Research page (affiliated with Michael J. Fox Foundation for Parkinson’s Research).