Thu, Sep. 04, 2003
By Amy Betrand
St. Louis Post-Dispatch
Pamela Wucher has multiple sclerosis. A few months ago she competed in a half Ironman - swimming 1.2 miles, biking 56 miles and then running 13.1 - and she's getting ready for a 150-mile bike ride.
Tim Ashwood has cerebral palsy. Next month the rock climber plans to tackle El Capitan, considered one of the premiere climbing walls in North America.
Betsy Derrington is a cancer survivor, but her goal right now is a black belt in karate.
For these people, it's all about control. Controlling their unpredictable muscles. Controlling the fatigue that plagues them. And taking back control of their own bodies.
And no, you don't have to take it to these extreme levels to get the benefits of exercising, which has been shown to help with symptoms of diseases such as multiple sclerosis, Parkinson's, cancer, cerebral palsy, diabetes, osteoporosis and epilepsy, among others.
"You don't have to do all that," says Dr. Robert Naismith, a fellow in neurology at the John L. Trotter MS Center at Barnes-Jewish Hospital in St. Louis. "You have to start out really slowly and very carefully. Anything will help."
A few years after graduating from college, where she had played club soccer, Wucher knew she wanted to get active again. She and a friend decided they'd try bicycling. While she was in a shop getting her bike ready for riding, she saw a flier for the MS 150, which helps benefit multiple sclerosis research.
"It was kind of a whim," she says, "but we decided we'd do it."
That's 150 miles of bike riding. Not something most people do on a whim, but most people aren't Pam Wucher, 33, of St. Louis.
The irony came four years later, when she was diagnosed with MS, a degenerative neurological disease that can affect vision, strength, coordination and sensation.
"It was scary," she says, "because everything you find on the Internet is a worst-case scenario - wheelchairs and loss of control. And it's not always physical - it's cognitive, too."
She woke up one morning in 1997 and found her arm numb. She didn't think much of it right away, but by the end of the day the whole left side of her body went numb. After six weeks those symptoms went away and stayed away for about a year, until one day, her whole body was numb.
"It was a horrible feeling," she says.
After she was diagnosed in 1999, Wucher started taking a shot once a day to help stave off the symptoms. But she wasn't going to stop there.
She turned again to exercise. "I decided not to let the disease consume me."
Since her diagnosis, Wucher has biked every MS 150, raising thousands of dollars for research and gathering a team of about 30 "Pam's Pedalers" to help her bike and raise money. She also just finished the half Ironman triathlon at Innsbrook, Mo., in June.
"Staying fit and having good endurance and strength and stretching can make a huge difference in terms of quality of life," says Naismith of the MS Center. "In the long term, keeping good strength is very important. If one leg loses half of its strength at one point, the other leg has to take over and do more work; the leg has to be strong enough to do that. If someone is out of shape, then they can have a hard time compensating for problems that come along with MS."
Wucher credits exercise with helping her stay mostly symptom-free for the past several years, though occasionally she'll have trouble walking a straight line or she'll feel odd sensations in her legs and arms. But setting goals motivates her.
"That sense of accomplishment is really important when you are facing something like this," she says.
"You don't have to take it to the half Ironman level to get that sense of accomplishment," Wucher adds. "But it's important to stay active, and set goals.
"MS can be debilitating. It can take away so much. Whatever I can do to stay healthy, I'm going to do. For me that's staying fit and being active."
Dr. Robinson Welch, a psychologist and clinic director for the Weight Management and Eating Disorder Program at Washington University, says the value of exercise is more than just physical.
"We do know exercise reduces stress and depression," says Welch. "The idea of personal control, this notion of self-efficacy, is important for people facing serious disease.
"When they have a serious illness, they feel completely out of control, helpless in the face of medical procedures. But then they begin to get active, and all of a sudden someone who feels out of control feels more in control. They feel more energetic, stronger. That process has a world of positive impact on the disease process and on mood."
Welch adds that it's important to start small. "Set small goals. Make exercise a habit. You'll see the benefits."
Tim Ashwood, 44, of Hazelwood, Mo., didn't set out to climb a mountain because he wanted to help his cerebral palsy, a neurological disease that begins at birth or in fetal development and affects the part of the brain that controls movement, balance and coordination.
He set out to climb the mountain to conquer his fear of heights and to do something that his father and grandfather had done before him. But in return he's gained some control over the muscles that sometimes have a mind of their own.
"The climbing has helped the muscles learn to balance themselves," says Ashwood. "When you do it everyday, the muscles remember."
Ashwood climbed Long's Peak's 1,000-foot Diamond (in Colorado) in 1999; it was something he'd wanted to do since he was a child but was afraid the cerebral palsy might keep him from doing.
After Ashwood took two months to train for that climb, a friend noticed he was walking differently. "We were walking down a hill, and a buddy pointed out that I was leading with my left, then my right, not just my right like I normally do. I was walking `normal.' My body started doing it without me being aware of it."
One of the problems with cerebral palsy is spasticity, or stiffness. Ashwood says stretching has helped relieve this problem.
"For some people, stretching may help spasticity without the need for medications, or can help the medicines to work more effectively," Naismith says.
Ashwood plans to take his concept of "adventure therapy" to the next level. He intends to take a year off from his job as a senior analyst at SBC. In September he'll be climbing El Capitan at Yosemite to raise money for Do It for Peace. He'll tackle that 3,500-foot sheer granite wall using a practice called jumaring, where he'll ascend the wall on a rope.
"I'm confident in myself and my team that we'll make it," he says. After that he plans to spend months training to free climb Yosemite's Half Dome, a 2,000-foot rock face.
As he did once before, he'll get a doctor to measure his strength and range of motion before he leaves and after he comes back. He did that in 2001, and "there were definitely improvements. The training really made a difference."
Breast cancer zapped the energy from Betsy Derrington, 50, of Ballwin, Mo. The surgery and the six months of chemotherapy left her weak and tired. Back then (she was diagnosed in 1986, when she was 36 years old), she turned to walking to help her overcome the fatigue.
"You've got to do the exercising to beat it," she says.
Sarah Stolker, the cancer rehab program manager at SSM Rehab, says she always recommends exercise to help cancer patients, especially those suffering from fatigue.
"Seventy percent (of her patients) get cancer-treatment-related fatigue," Stolker says. " It's an animal in itself. Weariness and exhaustion permeate their ability to even take a shower without rest. The literature points at exercise as the only way to combat these symptoms. Research shows that decreasing the resting heart rate increases the ability to perform activities of daily living. With exercise they can get through these activities without resting."
Stolker recommends interval training, in which patients work out for four minutes, then rest, then do another four minutes, so they build up their endurance.
A recent study in the Journal of Clinical Oncology cited improved survival rates for breast cancer patients who included exercise in their recovery.
"We increased fitness levels and as we point out, fitness is associated with decreased mortality_people with exercise capacity are expected to live longer, said Kerry Courneya of the University of Alberta and author of study. "But we also proved that exercise improves quality of life and increased quality of life improves survival."
Because exercise helped Derrington when she was recovering from her cancer, she turned to it again a few years ago. Derrington home-schools her son, Michael, 13, who has Asperger's syndrome, a disorder similar to autism, and cerebral palsy. After watching the wonders karate was doing for her son, she decided it might be a good way for her to get back in shape, especially as she was facing another surgery related to her cancer. (It was a reconstruction to get rid of the silicone implant.)
"Karate involves your whole body and your mind," says Derrington, who is working on her blue belt (she needs green, then brown, then she'll test for her black). "The one thing I have to say is that you can't afford not to have any energy and can't afford not to keep fit.
"At 50, I'm probably more fit after battling cancer and taking up karate than ever. I have a single-minded focus and strength that can help me do things in a powerful way."
Stolker, who helps treat Derrington, said she recommends exercise that focuses on the mental and physical, such as yoga, karate or Pilates, for cancer patients.
"They feed both sides of the weary cancer patient," says Stolker, who sees the value of exercise for anyone who's facing a serious illness. "Exercise brings them out of their anxiety. They enjoy the relationship that `if I do this, I get these results.' It's something they have control of."
FOR MORE INFORMATION
For more information about multiple sclerosis or the MS 150, call 1-800-344-4867 or log on to www.gatewayms150.org (to donate to Pam's Pedalers, click on epledge).
To donate or get more information about Do It for Peace, visit www.geocities.com/doitforpeace
or write Do It for Peace Inc., P.O. Box 161184, Sacramento, Calif. 95816-1184.
Copyright © 2003, St. Louis Post-Dispatch