DON'T TRY THIS AT HOME
"Extreme" Sports and People With Neuromuscular Diseases
by Phil Ivory
Some people feel they haven't lived until they've jumped from a plane or driven faster than 150 mph. Others would rather die than even attempt such feats.
Jim Hovland is suited up for his favorite pastime, racing performance go-carts, which top out at about 80 mph. |
This article is about sports "on the edge." We offer these stories as extreme examples of intrepid individuals who refuse to be limited by disabling disorders.
It's an accepted maxim that you should check with your doctor before starting any new and strenuous physical activity. It should also be noted that the individuals in this article have neuromuscular diseases that are less severely progressive than other disorders such as Duchenne muscular dystrophy or amyotrophic lateral sclerosis.
Jim Hovland, 36: Race Car Driver
Jim Hovland lives in Minneapolis. He received a diagnosis of Charcot-Marie-Tooth disease when he was a teen-ager. CMT describes a number of genetic disorders of varying severity that affect the peripheral nerves, causing weakness and loss of sensation in the lower legs, feet and hands. Hovland has undergone several bouts of orthopedic surgery on his legs and wears ankle foot orthoses (AFOs) but otherwise walks unassisted. He's an accountant.
"I was a pretty active kid," he says. "I played football and baseball, and when the CMT starting taking over, it really pulled me out of those activities, and it hurt, psychologically it hurt."
In the early 1990s, Hovland's marriage failed. His wife began to feel that she could no longer stand the uncertainty of Hovland's future due to his CMT. To take his mind off the pain of the divorce, Hovland became immersed in building a racing car with a friend. They raced the car on Utah's Bonneville Salt Flats, a favorite spot for racers because of the large area of flat surface. They reached 176 mph. Hovland was driving.
"You're on the course by yourself," Hovland says. "You're going way too fast to be competing with people. We designed the car specifically for me in that I'm in a kind of a semiprone position. I don't have the articulation in the ankles to be able to move my foot back and forth, so I basically accelerate and brake with my knees."
Jim Hovland, who has Charcot-Marie-Tooth disease, took this race car to 176 mph at Utah's Bonneville Salt Flats. |
The speed and the fun of building the car were intoxicating. Hovland was hooked. Now his passion is racing performance go-carts.
"Performance go-carts are similar to the fun carts except they will do about 80 mph," he says. "And I'm competing with about 16 to 17 people in my class on a weekly basis. The course is usually between half a mile and a mile, and we go for probably eight to nine laps. And then we do two heat races and a feature race for trophies. There's no money in it. It's all recreation, but it's very fast and dangerous. I'm wide open, there are no safety restraints, except for a neck brace, helmet, driving suit and driving gloves."
Hovland says the CMT definitely presents challenges in terms of controlling the car.
"I've got leg braces to deal with. I've got slower reflexes, practically no reflexes at all. And I literally have to be driving with my knees. There are times on the track when we're doing 60 to 65 mph and we're no more than two inches apart from each other. People have no problem with me racing against them. If you are a danger on the track, people will ask to have you removed. But the people that I race with are some of my best friends.
"I've been racing for years with people who had no idea I was disabled," he says. "Once, I sat down in my cart with my pants rolled up and this guy saw my braces and asked: 'Did you break your leg or something?' I said: 'No, I've got a neurological condition. I've got muscular dystrophy.' And he said: 'You drive with these on? Are you kidding me?' But this is what I do. I'm fairly successful at it. Out of 20 competitors, I've averaged fourth place overall."
Hovland says there are serious injuries and fatalities in this kind of racing. He recalls a race in which several fatalities occurred because a hedgehog ran out on the course.
"Last year, I was in a race and I was trying to pass a guy and he went a little bit wide and I hit a hay barrel and flipped two and a half times." Hovland wasn't seriously hurt.
Hovland's parents can't bring themselves to watch him race. His current girlfriend was enthusiastic about the hobby, until she saw his cart turn over. Now she has serious reservations.
"But she understands that it's either do this or sit on my butt. I've got to do something like this. CMT can diminish my muscles and my reflexes, but it can't diminish my mental capacity and I cannot just sit.
"One day, we were at an MDA picnic and we had a 1974 Mustang we were preparing to take out to the salt flats. This gentleman came up with his little boy and said his son was really into racing. So we let the little boy sit in the car and I said: 'You see that little black button on the dashboard? Push that once.' And when he pushed it the engine turned over. He put my helmet on and he was having a great time.
"I looked at his dad, who had a tear in his eye. His dad said the son was just diagnosed with Duchenne muscular dystrophy. He said I would never know what this meant to him."
Once the Minnesota winter ends, Hovland will be racing again. He's always looking for sponsors to help cover his racing costs.
"I cannot tell you what a freedom it is being able to do this. Words cannot express that. If there is one thing that CMT has taught me, it's not to let your limitation define your expectation. Go for the moon."
Aaron Edgell, 29, and Bill Higgins, 43: Skydivers
Aaron Edgell is a student who lives in Mesa, Ariz. He learned he had CMT when he was about 5 years old and started using a wheelchair at 15.
13,000 feet was NOT the limit for Aaron Edgell, who has actually skydived from as high as 25,000 feet. |
Edgell was always interested in athletics but, because he couldn't run or catch, he found his options rather limited during his school years. Some years later, he tried bungee jumping.
"You're in a body harness and they lift you up to a platform that's hanging off a crane, and they drop you," he says. "It was fun, but it was scary. I drank a beer before I went up there to do that one."
Edgell decided to take it to another level. He found an outfit called Skydive Arizona that promised him a chance to jump from a plane. He made a reservation and, a few months later, in April 1995, the dream became a reality.
"It's a tandem jump," he says. "I'm strapped to an instructor, and on his back is the parachute. So he's sandwiched between me and the parachute, and he does all the work. We go up to 13,000 feet. We have 50 seconds of free fall and about four minutes of hanging onto the canopy before we land.
"You kind of have an overload of the senses because you're doing something you've always been told you're not supposed to do or you're afraid to do," he says. Waiting for the chute to open can be a little nerve-wracking.
"That's when you expect things to go wrong. So you're relieved when it does open."
Edgell has done 61 jumps since that first one, including one high-altitude jump at 25,000 feet.
"We were so high that we had to wear oxygen helmets and tanks. As far as I know, nobody in the world in a wheelchair has done one from that high.
"There is risk, but it's one of the safest sports," Edgell says. "For anyone who's interested in this, I would definitely say talk to a doctor first. The opening impact of the chute can be a little rough. And sometimes you can have a hard landing, but usually you can make it as soft as you want it to be.
"It changed my whole outlook on life. I used to feel sorry for myself. But now I realize that the skydiving alone is something that 90 percent of people on the Earth will never do. And the fact that I've jumped from 25,000 feet I just can't help but smile about it."
Bill Higgins, 43, lives in Mission Viejo, Calif., and has inclusion body myositis, an inflammatory myopathy. He received his diagnosis after suffering a fall at the store where he worked as a salesman.
"I use a walker at home for short distances and a power wheelchair for everything else," he says.
After finding he could no longer work as a salesman, he began to look for activities to add some excitement to his life. He turned to skydiving. Like Edgell, he does tandem jumps, but only does one a year, planned around his birthday in the summer. His third one will be this summer.
"There wasn't really that much training to do because it was a tandem jump," he says.
"I can't really describe the feeling. The clear sky, the wind rushing past you at 120 mph. It's great. They had a couple of guys down there waiting for us on the drop zone. As we would come in, they would run alongside of us. They'd get ahold of my legs and ease me to the ground. No shock, no crash, just nice and easy.
"I don't think it has anything to do with a person's disability as much as it is the desire to want to do it, the heart," Higgins says.
Higgins has his eye on a new activity once he saves the money for it participating in an airplane dogfight. "You have a pilot next to you. He takes off, takes you up in the air over a safe area. Then you dogfight with another plane. You fly the airplane and try to maneuver and get off a shot at them, not with real bullets but with lasers that cause the other plane to trail smoke.
"It's pretty extreme," Higgins admits. "But anything that's fun to do, I'm pretty much open to do it."
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