Cancer Survivors “LIVESTRONG” in Cass-Clay

Combating cancer can take the wind from the sails of even the fittest, including avid athletes. World-renown cyclist Lance Armstrong knows. By age 25, he had already won the World Championships, the Tour Du Pont and multiple Tour de France races. But within a year (in 1996) he found that his biggest challenge had become beating cancer. Armstrong took an active and competitive approach to fighting his opponent—not just for himself, but for all cancer patients and survivors.  In 1997, during his own treatment, he formed the Lance Armstrong Foundation (LAF) to inspire and empower those affected by cancer.

Now, the LAF and the YMCA of the USA have connected to create “LIVESTRONG at the YMCA,” a program to support people affected by cancer reach their health and well-being goals. It’s a free 12-week fitness program designed for cancer survivors who have become chronically fatigued or reconditioned as a result of the disease or treatment.

A natural partnership

“Traditionally, there hasn’t been much formal follow up for cancer patients as far as physical activity, especially after they’ve completed conventional treatment,” said Kristan Bullinger, Marketing Director at the YMCA of Cass and Clay Counties.

But physical activity after cancer treatments can help reduce fatigue, improve state of mind, and increase strength and endurance. So it’s important for cancer patients and survivors to have a supportive environment to encourage and accommodate activity appropriate to each one’s needs.

So, in 2007, the LAF and the YMCA of the USA formed a unique and strategic partnership to provide that environment. The website www.livestrong.org states what had become obvious: “The YMCA is the perfect collaborator because of its national reach, commitment to meeting the needs of all community members, and history of program innovation in support of health and wellness.”

Dakotans, western Minnesotans among first in program

Over the past several years, “LIVESTRONG at the YMCA,” has been launched as a pilot program in only 20 locations across the United States. Among the first of the lead locations: the YMCA of Cass and Clay Counties, based in Fargo-Moorhead.

Currently, 2,686 YMCAs nationwide serve 20,916,698 members—or an average 7787 people per location. In 2009, the YMCA of Cass and Clay Counties served more than 41,000 different people across programs at its two facilities. Perhaps the number and breadth of those served was a factor in LAF’s selection of pilot facilities. Whatever the case, the YMCA of Cass and Clay Counties is the only Y currently offering the “LIVESTRONG at the YMCA” across the Dakotas, Minnesota, Montana, and much of the upper Midwest.

The pilot program included 12 members and was completed on January 28, 2010. Why such a small number when the location’s membership is large? “We wanted to keep the first group in the program at a smaller number of people so we could give them individual attention as we worked out details and procedures for the program,” said Bullinger. Even as the program advances, she says a goal will be to keep participants at fewer than 20 people per session so groups remain intimate and resources aren’t stretched thin.

Two new sessions are now underway at the YMCA of Cass and Clay Counties: a Tuesday/Thursday 6:30-8:30 p.m. group started April 6, and a Monday/Wednesday 1:30-3:30 afternoon group began May 10. The schedule for summer sessions is being determined—readers may contact the YMCA at (701) 364-4138 for summer program schedules.

Who can participate?

The LIVESTRONG program at the YMCA of Cass and Clay is currently open to adults who have recently completed cancer treatments and have been given approval from their doctors to start a mild fitness program. In addition, each participant is encouraged to invite a family or friend member to attend sessions with her or him for ongoing personal support.

Because the program is new both nationally and at the YMCA of Cass and Clay, sessions have not yet been developed for children and teens. However, Bullinger says that YMCA programs as well as residential and day camps such as YMCA Camp Cormorant can tailor programs for children and teens with special needs due to medical conditions and physical limitations when possible.  In addition, the YMCA of Cass and Clay offers a program for families in which a parent is dealing with cancer.

Current program participants came to learn about the LIVESTRONG program through varying means. Some were referred by their physicians to encourage continued progress toward well being. Sarah Linberg of Fargo says she’s been a member and supporter of the Y in the past, and learned of the program through an e-mail update when she was undergoing cancer treatment. Violet Deilke is cancer survivor who’s been recognized with statewide and national awards for her services to help cancer patients cope with physical-appearance changes due to cancer treatment. Deilke first heard of the LIVESTRONG program through her local cancer patient and survivor support group, Embrace.

Graduates of the 12-week program may also apply to return to future LIVESTRONG group sessions as program mentors.

Program flexibility is key to success

At an afternoon LIVESTRONG session, instructor Emma Lintelman leads a small group through a series of stretching and movement to enhance core strength, posture, balance, and flexibility. It quickly becomes apparent, though, that physical flexibility isn’t the most important aspect of the program. Instead, it’s the flexibility of the program itself that allows each person to proceed at their own pace and current ability that makes it a perfect fit for those at different levels of recovery.

“It’s more important that you challenge your current activity level than that you perfectly carry out the exercise,” Lintelman says. “Our staff is here to guide and work with each individual on proper technique.

Linberg describes the pace in one word: “Perfect.” After completing chemotherapy last fall, she wanted to build back up to regular exercise activities but just was not confident enough of her physical ability to jump back into a regular or stringent fitness program. “The instructors adapt to the abilities and capabilities of participants. Each person can progress as fast as they want to.”

Wallace and Jean Mitchell of Fargo (formerly of Rolla, ND) agree enthusiastically. “We’ve been stupendously impressed with how they [the instructors] have been able to adapt to each individual’s needs,” said Jean. After Wallace retired from a life-long postal career—a few years in Fargo and many years in Rolla—the couple moved back to Fargo to be near family. And after recent serious illness, his doctor at MeritCare referred him to the program to continue building strength. Jean has joined Wallace as his “support guest” for the program, and after 10 weeks says she sees obvious improvement in his balance and posture. “He walks noticeably better.  And of course, he likes to come each week and see the nice girls here,” she said, alluding to the friendliness of the instructors as perhaps a bit of extra motivation.

Lintelman says that the curriculum for the LIVESTRONG program is still being defined, and detailed activities might change as it evolves. “It’s based roughly on curriculum recommendations for cancer survivors from Stanford [University],” she said, referring to Stanford Medicine’s Cancer Center research. But, she said that she anticipates the curriculum to remain flexible and adaptable, because the needs of participants vary widely.  

Benefits reach far beyond fitness

The LIVESTRONG program offers far more benefits than its physical-fitness focus. Linberg points out that as a former YMCA member, she’s now much more aware of the breadth of programs that the YMCA of Cass and Clay offers, including multiple programs and amenities for those with special needs for medical or ongoing physical conditions.

Easing back into fitness at the Y also gives participants a chance to learn a bit about other YMCA classes they may wish to pursue at different stages of recovery, including yoga and aquatics. Bullinger also pointed out that the LIVESTRONG program has sharpened staffs’ awareness of small changes they could make to both the Fercho and Schlossman YMCA facilities, such as placing benches or seating more frequently in longer or larger corridors.

Program participant Nancy Jardine of Fargo was an avid swimmer before her illness, and wants to incorporate aquatics in her fitness routine once again. She heard about the LIVESTRONG program when visiting with a friend and fellow survivor from Bismarck. Pauline Alba, Aquatics Director for the YMCA of Cass and Clay and champion for the LIVESTRONG program, came to speak at a support group that Jardine and her friend were attending together. The association between aquatics, the Y, and the LIVESTRONG program motivated Jardine to enlist and start working her way to new goals.

Another participant, wishing to remain anonymous, said she found out about the program on the Web and was excited to see it was offered at the Fercho facility, just blocks from her home. She said she’d been interested in finding out more about the Fercho Y but was intimated by the thought of fitness levels she surmised other members held. When she found out about the LIVESTRONG program, she thought she’s “maybe try a few classes.” She joined, and hasn’t looked back.

“The sessions themselves were motivators for me, because of their pace and level. Also, I was encouraged to invite a friend to attend with me for additional support,” she said. That companion commitment, along with a prompt telephone call from the Y inquiring if she was OK after she missed a session, deterred her from missing sessions unnecessarily.

Deilke agreed, adding that “getting me to focus on a fitness program with a manageable routine” was a big benefit, and also that “socialization is a big part of motivation” for cancer survivors who often look to each other for support by sharing their experiences and unique stories. The small group in the program itself provides participants with a network with other cancer survivors.

A short list includes these benefits of the LIVESTRONG program:

• Build muscle strength and physical endurance
• Help strengthen immunities through fitness
• Create a supportive social network
• Develop a reliable routine to ease into a healthy lifestyle
• Form new friendships
• Generate mentorships for patients and survivors

Collaboration maximizes resources

The LIVESTRONG at the YMCA program is currently available in 20 cities across the US. By 2010, the goal is to expand the program to at least 150 YMCAs nationwide.

The partnership between the Lance Armstrong Foundation and the YMCA is just one example of recent collaboration among nonprofit groups to combine resources and best practices to ensure that donor dollars and time are maximized to improve lives. And the partnership isn’t limited to just the two organizations. To ensure that LIVESTRONG program at the YMCA is safe and effective, LAF and YMCA has worked a group of expert advisors across the United States to gather best practices related to physical activity and cancer survivors.

Graduates of the LIVESTRONG program can choose to continue their membership at the YMCA of Cass and Clay though an income-based paid membership. In the meantime, the YMCA and continue in their long-term to identify the many ways their combined staff can engage and support people affected by cancer in their communities and how they will provide a positive, learning environment to help survivors meet their personal health and well-being goals during treatment and beyond.

Interested the program and/or recommending it to cancer survivors or groups? Want to find about those best practices that help make collaboration through powerful partnerships an effective investment of giving resources? Learn out more about the LAF, YMCA and LIVESTRONG programs:

• Find out about the availability of the program in your area by contacting your local YMCA. To find the nearest YMCA, visit  www.ymca.net
• Visit the LIVESTRONG at the YMCA program Web site: http://www.livestrong.org
• Learn more about the YMCA of Cass and Clay at www.ymcacassclay.org

by Kate Henne, Today’s Giving