May 23, 2004
Olympic medal winner Jimmie Heuga was a pioneer when he, defying conventional wisdom, designed a program of exercise for people with multiple sclerosis, said Dr. George Garmany, a neurologist of Boulder.
Heuga, who was diagnosed with multiple sclerosis in 1970 at the height of his ski-racing career, funded The Jimmie Heuga Center -now called The Heuga Center- in Avon and started the program almost 20 years ago.
"The program is very significant," Garmany said. "Twenty years ago, the standard medical advice for people with MS was not to exercise and push yourself."
After he was diagnosed, Heuga designed a program of exercise, nutrition and psychological motivation and found not only his physical condition but his outlook on life also improved.
"Rehab medicine has reached the same conclusion as Jimmie did," Garmany said. "But because of this program, some specific research has been done demonstrating the benefits of exercise. Improved fitness helps to carry out daily activities and improve the quality of life of people with MS."
To date, more than 6,500 people have attended one of the center's signature CAN DO programs - a five-day medical wellness program for people with MS and their families. The center also funds research into the benefits of exercise for people with MS.
The center has a budget of $2.1 million. Aside of the Snow Express events, it also gets income from direct donations, grants and fundraising events.
"The CAN DO programs wouldn't be possible without national and local support," said Susie Kincaid, marketing director for The Heuga Center.
The center pays for about 70 percent of its programs through national fund-raising and local events.
Some could walk by themselves. Others came with canes, walkers and wheelchairs. Cindy Muir brought her cane and her walker.
"I'm faster with the walker," said Muir, 49, of Boulder, during a break Thursday at The Heuga Center's CAN DO program for people with multiple sclerosis. "I thought I didn't need (the program) because I had very mild symptoms. But things had gotten worse since last year."
A friend who lives in Edwards recommended the program to Muir, a former flight attendant who was diagnosed with multiple sclerosis in 1991.
"I want to educate myself and learn about things I can do," Muir said during the lunch break at the Lodge at Vail on Thursday. "You have to educate yourself, so you don't get so fearful."
For example, Muir, who was a competitive swimmer, said she stopped swimming when she couldn't float in the pool anymore.
"I got depressed," she said, "I sink. But I want to see other parts of being in the water, such as water aerobics. Things I can do."
And that's what 25 people with multiple sclerosis and their relatives and friends came to learn last week during the CAN DO program in Vail. The five-day long program for people with MS started Wednesday and ended Saturday at the Lodge at Vail. CAN DO is the flagship program of The Heuga Center, and one of several programs conducted by the national nonprofit headquartered in Edwards.
Mike Barta, 41, of Highland Village, Texas, came with his fiancee, Angie Phillips, who attended the support partners sessions.
"I've had the symptoms for 20 years, but didn't put it together," said Barta, who was diagnosed last year, the day after his 40th birthday. "One day, I was out on my mountain bike and I couldn't stay balanced."
What CAN we DO?
Multiple sclerosis is a disorder of the brain and spinal cord (central nervous system) caused by progressive damage to the outer covering of nerve cells, which results in decreased nerve functioning.
Some people, such as Barta, can live years with the disease before symptoms appear or worsen. Cindy Muir said she was doing quite well until last summer, when she had dental surgery.
"Walking has gotten worse, and I have heat intolerance and problems with my balance," she said.
"You have to retrain yourself to do the simplest of tasks. Such as putting your earrings on," she added.
Kim Bostam, who was diagnosed last Christmas, came from London with her husband to do the program.
"I was interested in it because it's focused in exercise," said Bostam, a 42-year-old marketing executive who said she doesn't like to talk all day about MS.
"I'm not in denial, but I'm in defiant," Bostam said. "You have a great opportunity to do what you can to stay well. Sometimes, I get to work at 10 a.m. instead of 9 a.m., but I'm still working."
The CAN DO program teaches people with MS an overall approach to the disease, said Erin Murray, a physical therapist working at the program.
"It's a well-rounded approach. Not just from a medical point of view, but from the emotional and social sides as well," Murray said.
A team of 40 specialists from all over the country conducted the program, which included a complete physical and cognitive assessment, seminars, individual consultations, exercise workshops in the pool and on the Swiss ball, stretching and learning strategies for integrating wellness activities into daily life. Each participant leaves with a personalized program and the life management techniques for achieving their individual goals.
The program also included lectures on education, nutrition, mental well-being and exercise, as well as teaching specific life management skills.
"Staying healthy is very important to people with MS," said Dr. George Garmany, a neurologist from Boulder, who has been working for the CAN DO programs for 20 years. "A lot of people with MS don't know that they can learn ways to lead a healthier life."
Sharing life with MS
Unlike other programs, CAN DO programs also focus on the family members or caretakers of people with MS.
"Relatives and friends can be supportive, but still take care of themselves," said Kim Lennox, director of special events for The Heuga Center.
Loma Oman, Cindy Muir's mother, came from Ohio to be with her daughter during the program. Muir, who is single -she lost her good friend in the TWA plane crash in 1996- lives alone in Boulder.
"I find it hard to keep up with things from Ohio," Loman said. "Here, you get lots of information because you get the perspective of what other partners of people with the disease are going through."
Angie Phillips, 32, who is marrying Mike Barta on July 17, said she has a little fear of the unknown.
"That's one of the reasons I was looking forward to the program," said Phillips, who got engaged after Barta was diagnosed. "Since we learned of the disease, I haven't been focused on myself."
After a couple of days in the program, Phillips said she noticed a difference in Barta.
"The program has given him a renewed optimism," she said. "This shows that MS isn't a death sentence, but something he can live with. You can see people who were diagnosed in the 70s, who are still walking with a cane."
While Barta was getting his individual consultation with specialists on Thursday, Phillips had a chance to discuss her honeymoon at the support partners session.
"Mike (Barta) is determined to go to the beach for the honeymoon, but the heat isn't good for him," said Phillips, who immediately got advice from other MS partners on where to go.
Barta said he was very pleased with the program.
"I'm looking for encouragement," he said. "I've got more in the past two days than I had in a year visiting doctors."
Muir said she loves the name of the program, CAN DO.
"That's the whole premise of it. It's very inspiring," said Muir, who
started a support group in Boulder for people with MS. "The disease is
part of our life, but we're not the disease."
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