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Skiing With TBI and Paralysis

Skiing With TBI and Paralysis

One man's determination to ski again after a paralyzing car crash.
By Elizabeth Carey
posted: 05/29/2014
Jeff Parelli Dropping Into A Run | Photo Courtesy Of Michael Parelli
Photo courtesy of Michael Parelli.

When a car accident damaged Jeff Parelli’s brain, it rendered the once-avid skier paralyzed on his left side. The Pennsylvania stockbroker lost his job, his mobility, and the ability to count and read.

In the weeks following the 2007 accident, he struggled to speak, eat, dress, and even comprehend why he was in a rehab facility, the John Hines Institute of Rehabilitation in Wilkes-Barre, Pennsylvania. “With brain damage, you really do not know who you are,” he says. “You look at a mirror and don’t really know much of anything and you don’t understand the extent of your injuries.”

One of Parelli’s three children, Kristen Jannuzzi, visited every morning. About two weeks after the accident, she attended Parelli’s first cognitive therapy session on a particularly difficult, icy morning when her mother couldn’t make it into town. “Dad couldn’t speak clearly,” she says. He was confused and mistakenly called her Robin, her mother’s name.

But then the topic of skiing came up.

“A light came back on in my dad,” says Jannuzzi. “He started talking like his own self. He started talking about Killington and Whiteface. They talked about trail names and skis.” Parelli turned to Jannuzzi and asked, “Kristen, do you remember when we went to Switzerland?”

From that morning forward, at three to four weekly sessions, Parelli met with the therapist. “All they’d talk about was skiing,” Jannuzzi says.

Despite his therapists saying he wouldn’t regain use of his left side, and despite a severe traumatic brain injury (TBI), Parelli wanted to do two things: ski and hike. Now, seven years later, he’s skied Sugarbush, Whiteface, and Elk Mountain, and even bagged one two of the Adirondack’s highest peaks, Cascade and Big Slide.

“It’s a heckuva journey,” 58-year-old Parelli says. And he tells it to us here.

Tell us about the accident.

It was March 30, 2007. It was frosty, but you could feel the warmth of the spring sun as you walked to the car. I was driving to my office, and, at the last second, I couldn’t believe someone was pulling out in front of me. I tried to avoid him, but I wasn’t able to.

I had severe TBI. I wasn’t terribly aware in the early weeks and month because my brain had swelled. That was a very difficult period. I was not able to move my left side, arm, or leg.

I had to go through cognitive therapy for my brain, and physical therapy for my body at the same time. Early in the morning they’d come in and dress me and try to teach me how to dress. It wasn’t just that I had one arm to dress with, it was the brain—the executive functions didn’t know how to even begin to do it. Jeff Parelli skis with a full-length leg brace, arm sling, and one pole.

When did you ski again? How did it go?

I don’t know why I, in a wheelchair, thought that I’d get a chance to ski. I desperately wanted to ski at least once—I don’t know if was to validate that I never could. But I was insistent on this and made no sense to my family. It was just in me. 

I use a wheelchair daily. But I also wear a full KAFO (which stands for knee-ankle-foot orthosis, a full-length leg brace that stabilizes my joints). It goes under my foot and comes up to my hip and allows me to walk. I love to ski, I love to climb mountains, and the KAFO—I call it Harvey—has allowed me to do some of that. It’s not manufactured for that reason and your doctor will tell you to “absolutely not” to ski or hike in it. It’s meant for you to walk into a room with your wife. I walked my daughter down the aisle in it when she was married.

I’d had “Harvey” for about five months when my daughter Melissa took me skiing for the first time. In the winter after my accident, she took me to Mt. Snow in southern Vermont. My first attempt to ski was a little wild. But I figured it out, made some adjustments and modifications to the KAFO, and it was a glorious day. I actually skied. Not great, but I got down the hill a couple of times, with the beautiful scenery and snow and my daughter.

 

Video courtesy of Michael Parelli. 

Since 2008, I’ve been skiing about twice a year, maybe three to four hours at a time, because it takes a lot out of you. I have to rest in between runs. I still feel it two weeks after skiing. I don’t know how it looks—I mean, I have a sling and a brace, and I’m holding onto one pole. I’m sure it’s not real pretty, but it sure feels good to do it.

My son takes me up to Whiteface, which I know well from my childhood. It’s a mountain that I love. To ski that mountain was an accomplishment and a wonderful, wonderful experience.

As a TBI patient, you’re not going to go often, but you’re going to remember it all year long until you can go again. And you will.

What is it like to ski with the KAFO?

“Harvey” has hitches on both sides of my knee with cables that come down to hinges. In the cold weather, the cables will contract and lock. When you’re going over a headwall or through a field of moguls, you can’t have one of your knees completely straight like a two-by-four. You just can’t. And when this KAFO locks, as it did to me when I was just learning, you can’t bend your knee. So I had to bail out. It’s very dangerous—terrifying, actually. Now I use electrical tape, rubber jar grips, tissues, napkins, floss, a hiking rope toggle—anything I can to modify it so it doesn’t lock on me.

The KAFO goes into my left boot and under my foot. It’s plastic and fiberglass, and it keeps my toes up because without feeling they drop. As a skier you can imagine how stiff that plastic is coming out of your boot and all the way up your leg. So if you rock your hips and roll the right ski up, your left ski’s going to roll. It doesn’t take much shifting of your weight to have your skis in perfect form. 

What challenges do you face in a ski day?

Where the ground is flat, it is very difficult. I have one pole and am basically skiing around on one leg and pushing with one arm. People with disabilities have trouble on the flats, steps, around the lodges, getting in and out of cars. But once you’re going downhill, it’s remarkable.

I struggled so hard on little steps going up to a deck of a warming hut, for example. My son and I were laughing because how the heck can you ski diamonds like that, rip ‘em, and then when you take your skis off to go into a hut you’re leaning on a railing, trying to get up four steps. It just made me think, “There could be a ramp here.”

Or skiing into a lift line on flat ground, working your way back around the rope, especially if there’s no one there, is really difficult and can wear you out to the point where your day is going to be shortened.

But I’ll tell you, when people see me skiing in a sling and a brace, their reactions are so positive. They tell you they’re inspired. I don’t care if it’s groomed, ungroomed, too many moguls, not enough moguls; It can be snowing, it can be warm, cold, windy; With high speed quads, a low speed quad, you have a gondola, you don’t, I don’t care. I’ll love it. Photo by Daniel Sloane, NYSkiBlog.com: At the Parelli's local ski area, Elk Mountain, Jeff Parelli's ski boot exploded. The pressure from the stiff full-length leg brace caused the boot to rip right off its sole, which was left in the binding. "You're getting a lot of pressure at high speeds, on moguls, and on steeps," Parelli says. "I was fortunate that the boot blew when I was just starting down a trail...Someone helped me walk down the mountain with my ski things."

How does the TBI and paralysis affect you?

I have to be very cautious if I want to encourage other TBI patients to ski. Anyone with TBI has to be aware that they have to measure the risk for themselves and then see if they can enjoy the experience. There are risks to skiing with TBI. You cannot hit your head again. When you ski, it’s a no-fall day. 

I want any TBI friends to understand this, too: We have seizures. We have transient ischemic attacks, and they can come on at any time. There are warnings, like nausea, that you have to pay attention to, but the risk is apparent.

You have to be careful about your skin. You have to take every possible precaution to not get a sore, because it may not heal.

You have to go during the week. A lot of us have a condition where our vision is fine, but our brain won’t process what we see. So I may not see someone skiing or trees to my left. You have to be very careful about that.

Do you wear a special helmet or any other unique gear?

If you don’t wear a helmet, wear one. There are two issues for some of us [with TBI]. One is left-side neglect (a condition caused by damage to the right side of the brain) and depending on the design of the helmet it can actually encourage this disorder to manifest itself. The other issue is what I call the rocking chair effect or the inverse pendulum effect. The weight of a helmet can aggravate this problem for us. It’s kind of like the difference between having a whiffle ball and a softball attached to the top of a car antenna. So I would love some help on this. A very light helmet with the left side pretty open may be the answer. 

What does it feel like to ski again?

The skiing is phenomenal. If your leg is receiving a message from your brain, we say it’s “firing.” I don’t know how to explain it other than saying when I’m on the snow I think my brain, my arm, and my leg fire.

On the snow, it’s an amazing experience for me, to be able to ski and to have that speed and power and timing and balance. I cannot describe it. I try to measure the risk and reward, and I’m taking the risk.

I don’t have a driver’s license. I’ve lost my professional licenses. So being able to do something like this that I love so much—being able to have a sense of control, speed, and rolling your skis up on their edges, of loading them, and your skis will do whatever you ask them—it’s wonderful. I probably need to find the words to describe that freedom. You know, the laughing as you’re skiing.

Jeff Parelli with his wife Robin and children Michael Parelli, Kristen Jannuzzi, and Melissa Jordan on a trip to Switzerland.

How did your accident change you and your relationship with your family?

[My kids’] love and support for my wife Robin and me through this has been unbelievable and has made all the difference. That kind of love and support by my family is everything. TBI can destroy relationships and destroy marriages. I think my wife and children went through more than I did. 

But if you have the love and support of your family and friends, you can get through it. For me, I can see the gifts of that accident. I’m not suggesting at all that it is easy, but it gave me a better understanding. I truly enjoy every day.

For people who are physically and mentally healthy, I’d encourage them, if they have a healthy brain, to use it—to really use it. If you have a healthy body, get out there and do what you enjoy. Do it. Get out there and use that marvelous body that will deliver for you.

reviews of Skiing With TBI and Paralysis
Jeff - Have you tried wearing a (normal) ski helmet all the time when you are not skiing? This might allow you to adjust to the differences you feel when you don a helmet just for skiing.
Alpineskier-thankyou for your comments on wearing a ski helmet at times when not skiing....I will give it a try as this seems to make sense....thankyou again and enjoy the day
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