All About Multiple Sclerosis

More MS news articles for May 2003

Living life with MS

May 18, 2003
Veronica Whitney
Vail Daily

Though he was diagnosed with Multiple Sclerosis 20 years ago, doctors have hardly spent time with Luis González de Castilla.

But that changed last week, when González de Castilla, 55, and his wife, Marianne, both of Mexico City, Mexico, spent some 45 hours with specialists of The Heuga Center in Vail as part of the CAN DO program.

"When you go to the doctor at home, he just asks you what you're doing," Luis González de Castilla said Sunday during the program's closing brunch in Vail. "They don't guide you like the specialists did during the program. At the CAN DO program, they give you a road map."

The González de Castillas where among 44 participants to attend CAN DO. 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 nationally-acclaimed, non-profit organization.

Olympic medal winner Jimmie Heuga, who was diagnosed with MS in 1970 at the height of his ski-racing career, funded the center and started the program almost 20 years ago in Avon.

"This is the only program of its kind in the world," said Brian Hutchinson, president of The Heuga Center. "We are a fairly well kept secret and we hope the people who attend our programs can be our ambassadors."

Setting life goals

For Luis González de Castilla, one of the highlights of the CAN DO program was learning tools he can use to enjoy life more. González de Castilla, who once struggle with the idea of getting a cane, now plans to get a scooter or a wheelchair to help him go places with his family.

"This is important because the disease limits you and you keep getting limited," Marianne González de Castilla said.

MS is a disorder of the brain and spinal cord and the central nervous system. Progressive damage to the outer covering of nerve cells causes nerve functions to decrease.

Tom Openlander, a 45-year-old fire chief from Kirkwood, Mo., was diagnosed with MS in 1998. Looking picture perfect and healthy, he calls it the invisible disease.

"Just like me, in many cases, you don't look sick but you feel fatigue most of the time," he said.

Openlander, who attended the program with his wife, Holly, said one of the most important things he learned at the program was to take care of himself.

"If you're going to work on the disease, you need to take care of yourself, take time off work," he said. "Coming to the program is a good example of taking care of yourself."

A team of 40 specialists from all over the country conduct the program, which includes a complete physical and cognitive assessment, seminars, individual consultations, exercise workshops in the pool and on the Swiss ball, stretching as well as learning strategies to integrate wellness activities into daily life.

Each participant leaves with a personalized program and life management techniques to achieve individual goals.

The CAN DO program takes a whole-person approach to helping people with MS, said Jon Feeney, a doctor who has been with The Heuga Center since it started in 1984.

The program also includes lectures on education, nutrition, mental well-being and exercise, as well as teaching specific life management skills. "A lot of MS patients who come to the programs, haven't had global exposure to the team approach, the integrated approach to wellness," Feeney said. "The program helps participants set personal life goals and then gives them the strategies and support to strive for those goals. The idea is that life comes first and not MS."

Unlike other programs, CAN DO also focus on the family members or caretakers of people with MS.

Community help

"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 and local fund-raisers like this year's "50s Bash and the upcoming Heuga Invitational Golf Tournament at Cordillera Mountain Course in Vail.

"The patients pay $2,000 for the program, one-third of what it costs," Kincaid said. "We also offer scholarships to those who can't afford it."

In his closing speech, Jimmie Heuga told last week's program participants that life with MS is trying to adapt to circumstances.

"I know when you came here, you had a lot of reservations," he said. "We hope we have provided you with some light, with some certainties.

"When you go back home, you won't have the group to support you, but you take with you a plan that will help you to work around the beast."

Phyllis Martinez, the center's new fund-raiser director, said she found it interesting to see the changes participants went through from Wednesday through Sunday.

"Some were transformed," she said. "By Sunday, they had smiles on their faces. It was a very hopeful experience."

The Heuga Center

Jimmie Heuga funded The Jimmie Heuga Center - now called The Heuga Center - in 1984 in Avon.

Heuga was diagnosed with Multiple Sclerosis in 1970, at the height of his ski-racing career. At that time people were advised to avoid physical activity. Defying conventional wisdom, Heuga designed a program of exercise, nutrition and psychological motivation and found not only his physical condition but his outlook on life improved.

One in 800 Coloradoans has MS, that's a number 20 percent higher than the national average, making The Heuga Center's location in Edwards ideal.

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 excercise for people with MS.

The center has a budget of $2.1 million. Aside of the Snow Express events, it also relies on donations, grants and other fundraising events.

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