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by Linda Zears
“A stroke is an injury to the brain that can cause life altering changes,” says Marylee Nunley, Executive Director of Retreat and Refresh Stroke Camp, a local non-profit organization that provides, “A Camping Experience for Stroke Survivors and Their Caregivers.”
The weekend long experience is meant to refresh survivors, caregivers, and family members from the many challenges they face daily related to stroke, and to provide socialization, relaxation, education and support in a fun, safe, and accepting environment. Resources participants have access to include speech and language resources, handicapped recreational equipment, physical therapy and nutrition tips, and aid in dealing with depression and isolation.
The camp, an idea wrought from Marylee’s and her husband, John’s, own personal experiences as caregiver and stroke survivor, respectively, began after researching and trying to find ways to connect with others and to “have fun again” after the unrelenting “seriousness” of John’s massive stroke and three-year recovery process. Marylee, who had previously been involved with her sister’s successful efforts in establishing a camp program for children with Cystic Fibrosis, had experienced the process of building such an opportunity and the benefits of participation in that type of activity. She was feeling as if she “couldn’t make it by herself” and had seen what support and connection with others experiencing the same challenges could mean.
In 2004, she and her sister put together one camp for the first year. Marylee submitted a story to a national magazine, “Stroke Connection,” which was published and sparked interest in her concept. The second year, the plan was to do two camps. In the meantime, Marylee began discussing her new endeavor with a friend and colleague, Larry Schaer. As a business entrepreneur himself, he felt that she “was on to something.” Using his expertise and a certain synergy that developed between their joint skills and experiences, he came up with a business plan, and they began “taking the camps to the people.” When people attended and started sharing with others how meaningful their experiences at Retreat and Refresh Stroke Camp were, there was an exciting response. In 2007, RRSC became a nonprofit business, and since then the number of camps per year has gone from one, to four, to six, to 25 this year. The camps have taken place in 15 states.
A typical camp begins on Friday afternoon and lasts through lunch on Sunday. Usually, the number of participants number around 20.
by Linda Zears
“A stroke is an injury to the brain that can cause life altering changes,” says Marylee Nunley, Executive Director of Retreat and Refresh Stroke Camp, a local non-profit organization that provides, “A Camping Experience for Stroke Survivors and Their Caregivers.”
The weekend long experience is meant to refresh survivors, caregivers, and family members from the many challenges they face daily related to stroke, and to provide socialization, relaxation, education and support in a fun, safe, and accepting environment. Resources participants have access to include speech and language resources, handicapped recreational equipment, physical therapy and nutrition tips, and aid in dealing with depression and isolation.
The camp, an idea wrought from Marylee’s and her husband, John’s, own personal experiences as caregiver and stroke survivor, respectively, began after researching and trying to find ways to connect with others and to “have fun again” after the unrelenting “seriousness” of John’s massive stroke and three-year recovery process. Marylee, who had previously been involved with her sister’s successful efforts in establishing a camp program for children with Cystic Fibrosis, had experienced the process of building such an opportunity and the benefits of participation in that type of activity. She was feeling as if she “couldn’t make it by herself” and had seen what support and connection with others experiencing the same challenges could mean.
In 2004, she and her sister put together one camp for the first year. Marylee submitted a story to a national magazine, “Stroke Connection,” which was published and sparked interest in her concept. The second year, the plan was to do two camps. In the meantime, Marylee began discussing her new endeavor with a friend and colleague, Larry Schaer. As a business entrepreneur himself, he felt that she “was on to something.” Using his expertise and a certain synergy that developed between their joint skills and experiences, he came up with a business plan, and they began “taking the camps to the people.” When people attended and started sharing with others how meaningful their experiences at Retreat and Refresh Stroke Camp were, there was an exciting response. In 2007, RRSC became a nonprofit business, and since then the number of camps per year has gone from one, to four, to six, to 25 this year. The camps have taken place in 15 states.
A typical camp begins on Friday afternoon and lasts through lunch on Sunday. Usually, the number of participants number around 20.
Blogger note: the number 20 refers to the number of stroke survivors. In addition to them there are their caregivers who attend with them and anywhere from 10 to 20 volunteers who help out through the weekend. The actual number of participants, therefore, can be closer to 60. The environment we provide is a handicap accessible, motel, hotel, or lodge style environment. Each survivor/caregiver pair is provided a private room with bath, and all meals are catered. Crafts, entertainment and pampering are also included. Back to you Linda...
The activities are planned so that participants can have the most exposure to nature, the sun, the sky, the wind in their faces, and a watchful eye on the “fatigue factor” for participants and volunteers. Educational opportunities abound with keynote speakers, such as pharmacists and neurologists, and DVD and video sessions. Breakout sessions provide support and other educational opportunities. Survivors, caregivers and families have a chance to do karaoke, play drums, participate in games, and sing and dance in a safe place where everyone understands. Pampering and relaxation are included! On Saturday morning , a massage therapist soothes sore, stressed necks and shoulders, while achy hands get a paraffin treatment to ease the pain, and chair exercises in Tai Chi and yoga relax the mind, body, and soul of participants. Healthy meals are planned and served, and survivors are assisted by volunteers, so that both they and those accompanying them can relax during mealtime. Golf-cart rides around the grounds, along with campfires and s’mores in the evenings round out full days!
One special, annual camp is held by RRSC in Fulton County at Living Springs. This camp is designed to meet the needs of younger stroke survivors who have children, and kids who are learning to cope with the challenges of stroke. It is one day longer and gives kids an opportunity to meet and interact with other kids facing similar experiences.
The practicality of “take aways” for participants is information not found in the “doctor’s office,” but from fellow participants learning to cope in their own set of circumstances. One stroke survivor learned that she was not “lazy,” as someone had suggested, when she needed to take a nap midday. Napping can be a necessity, as the functioning brain labors to compensate for other parts that have been affected, in dealing with the tasks at hand, and needs time to rest and recharge. The survivor could now engage in appropriate self care without guilt. After 12 years of attempting a multitude of ideas to lessen a survivor’s anxiety over the daily schedule, it was a suggestion from a fellow caregiver, who had been successful in finding a solution, that finally gave a participant the tool that was needed to relieve both survivor’s and caregiver’s anxiety. Just one example of “science” being discovered in the experience, rather than in the doctor’s office, is the “Sierra Mist/quinine connection. When "hemiplegia,” or paralysis occurs on one side of the face of a stroke survivor, there may be a loss of the sensation of saliva in the mouth leading to it leaking out undetected from the affected side of the mouth. It was discovered that if the survivor drank some Sierra Mist soda, it minimized the “drooling.” Further investigation revealed that the unique ingredient of that soda, rather than others, was “quinine,” which seems to affect that process in a positive way.
Retreat and Refresh Stroke Camps are possible largely due to the volunteers and sponsors, says Nunley. The staff of RRSC is small: Marylee Nunley, Larry Schaer, and office manager and music therapist, Lauren Kramer. Volunteers provide invaluable and priceless support for survivors as they navigate through the activities of the camp, and during mealtimes. Assistance to survivors and freedom to the caregivers and family to participate together and separately with survivors is invaluable.
Sponsors of the camps tend to be stroke centers and rehabilitation services, taking on the expenses of bring “the circus to town,” Marylee says with a smile. A recent quote from a sponsor, “It is an honor to be part of a team working towards the same goal…to give them a life back.” This sponsorship and the dedicated volunteers allow RRSC to keep costs to participants at $125 per person for the entire weekend, with everything included. Once the acute medical care has ceased, rehabilitation services are waning, and insurance payments are nonexistent, recovery can and does go on. Not only does Retreat and Refresh Stroke Camp provide survivors, caretakers, and family members opportunities to refresh from the challenges of stroke and to realize they can still have fun and laugh, but it exposes participants “in new ways to relevant and practical topics.” Feedback from participants has included expressions of “having fun,” “feeling understood,” “encouraged,” “being around people who knew what I was talking about,” “no longer needing to hide or feel ashamed,” and “a life-changing event.”
One good idea can often mushroom, and that has been the case with RRSC. A multi-level community outreach has resulted from the growing role that RRSC has in building Stroke Awareness. “Strike Out Stroke,” a trademarked stroke initiative targeting major/minor league baseball, has been used to promote the "FAST,” the signs of stroke message to fans, efforts that by 2014 have reached 1.5 million people. Other educational efforts targeting our community are the fifth grade Education Programs, and the “Mega Brain and Stroke Learning Center.”
Fifth graders in our community hear stories from survivors, caregivers and medical personnel, learn the signs of strokes, and through fun and interactive activities, learn the challenges of being a stroke survivor. A poster contest is held and the grand prize winner earns a ride on the Life Flight Helicopter, which lands in the middle of Dozer Field where they throw out the first pitch of the game, one dedicated to Stroke Awareness. All fifth grade posters are on display at the game. You just might see the Mega Brain and Stroke Learning Center there and at other places around town.
Survivors, caregivers and families feel a real need to give back to their community. One of the activities of the camp has grown into another community outreach is the “Chime Strokers,” a performing tone chime ensemble made up of survivors and caregivers, and directed by music therapists.” The ensemble is available for “gigs” and use their performances to bring stroke and survivor awareness to the community.
To connect to and learn more about Retreat and Refresh Stroke Camps and the community outreach programs mentioned:
Located at: 2000 Pioneer Parkway, Suite 16, Peoria, IL 61615
Phone: 866.688.5450 or 309.688.5450
Internet: www.strokecamp.org info@strokecamp.org www.strikeoutstroke.com www.rrscb.blogspot.com
and on Facebook at https://www.facebook.com/strokecamp
One special, annual camp is held by RRSC in Fulton County at Living Springs. This camp is designed to meet the needs of younger stroke survivors who have children, and kids who are learning to cope with the challenges of stroke. It is one day longer and gives kids an opportunity to meet and interact with other kids facing similar experiences.
The practicality of “take aways” for participants is information not found in the “doctor’s office,” but from fellow participants learning to cope in their own set of circumstances. One stroke survivor learned that she was not “lazy,” as someone had suggested, when she needed to take a nap midday. Napping can be a necessity, as the functioning brain labors to compensate for other parts that have been affected, in dealing with the tasks at hand, and needs time to rest and recharge. The survivor could now engage in appropriate self care without guilt. After 12 years of attempting a multitude of ideas to lessen a survivor’s anxiety over the daily schedule, it was a suggestion from a fellow caregiver, who had been successful in finding a solution, that finally gave a participant the tool that was needed to relieve both survivor’s and caregiver’s anxiety. Just one example of “science” being discovered in the experience, rather than in the doctor’s office, is the “Sierra Mist/quinine connection. When "hemiplegia,” or paralysis occurs on one side of the face of a stroke survivor, there may be a loss of the sensation of saliva in the mouth leading to it leaking out undetected from the affected side of the mouth. It was discovered that if the survivor drank some Sierra Mist soda, it minimized the “drooling.” Further investigation revealed that the unique ingredient of that soda, rather than others, was “quinine,” which seems to affect that process in a positive way.
Retreat and Refresh Stroke Camps are possible largely due to the volunteers and sponsors, says Nunley. The staff of RRSC is small: Marylee Nunley, Larry Schaer, and office manager and music therapist, Lauren Kramer. Volunteers provide invaluable and priceless support for survivors as they navigate through the activities of the camp, and during mealtimes. Assistance to survivors and freedom to the caregivers and family to participate together and separately with survivors is invaluable.
Sponsors of the camps tend to be stroke centers and rehabilitation services, taking on the expenses of bring “the circus to town,” Marylee says with a smile. A recent quote from a sponsor, “It is an honor to be part of a team working towards the same goal…to give them a life back.” This sponsorship and the dedicated volunteers allow RRSC to keep costs to participants at $125 per person for the entire weekend, with everything included. Once the acute medical care has ceased, rehabilitation services are waning, and insurance payments are nonexistent, recovery can and does go on. Not only does Retreat and Refresh Stroke Camp provide survivors, caretakers, and family members opportunities to refresh from the challenges of stroke and to realize they can still have fun and laugh, but it exposes participants “in new ways to relevant and practical topics.” Feedback from participants has included expressions of “having fun,” “feeling understood,” “encouraged,” “being around people who knew what I was talking about,” “no longer needing to hide or feel ashamed,” and “a life-changing event.”
One good idea can often mushroom, and that has been the case with RRSC. A multi-level community outreach has resulted from the growing role that RRSC has in building Stroke Awareness. “Strike Out Stroke,” a trademarked stroke initiative targeting major/minor league baseball, has been used to promote the "FAST,” the signs of stroke message to fans, efforts that by 2014 have reached 1.5 million people. Other educational efforts targeting our community are the fifth grade Education Programs, and the “Mega Brain and Stroke Learning Center.”
Fifth graders in our community hear stories from survivors, caregivers and medical personnel, learn the signs of strokes, and through fun and interactive activities, learn the challenges of being a stroke survivor. A poster contest is held and the grand prize winner earns a ride on the Life Flight Helicopter, which lands in the middle of Dozer Field where they throw out the first pitch of the game, one dedicated to Stroke Awareness. All fifth grade posters are on display at the game. You just might see the Mega Brain and Stroke Learning Center there and at other places around town.
Survivors, caregivers and families feel a real need to give back to their community. One of the activities of the camp has grown into another community outreach is the “Chime Strokers,” a performing tone chime ensemble made up of survivors and caregivers, and directed by music therapists.” The ensemble is available for “gigs” and use their performances to bring stroke and survivor awareness to the community.
To connect to and learn more about Retreat and Refresh Stroke Camps and the community outreach programs mentioned:
Located at: 2000 Pioneer Parkway, Suite 16, Peoria, IL 61615
Phone: 866.688.5450 or 309.688.5450
Internet: www.strokecamp.org info@strokecamp.org www.strikeoutstroke.com www.rrscb.blogspot.com
and on Facebook at https://www.facebook.com/strokecamp
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