BERNARDS TOWNSHIP, NJ – “The Awesome 80’s” was the theme for the weekend at the Retreat & Refresh Stroke Camp, from Friday, June 10 to Sunday, June 12, at the Fellowship Deaconry Ministries Retreat Center in Basking Ridge, NJ. Approximately sixty stroke survivors and caregivers attended the event, filled with 80’s music, retro dances, laughter, hugs, tears and encouragement
This was the third annual Stroke Camp event in New Jersey. Angela McCall-Brown, a stroke nurse practitioner at the Comprehensive Stroke Center at Overlook Medical Center, is a volunteer at the camp. McCall-Brown noted “A few years ago the camp was brought to our attention at Overlook Medical Center. Since then, we’ve included all the hospitals in the Atlantic Health System: the comprehensive stroke center at Overlook Medical Center, Morristown Medical Center, Newton Medical Center, Chilton Medical Center, and the Hackettstown Medical Center. We have nurses and therapists from all of the sites, and our goal is to be volunteers.”
McCall-Brown explained, “One of the things we try to do is to relieve the caregiver. They’re so used to doing the day-to-day things for the stroke survivors, and we try to take over to give them a break, a chance to feel refreshed, both the survivors and caregivers.”
Among the activities included in the retreat were a drum circle, a campfire gathering, fishing, swimming in the pool, karaoke, game show activities and birdhouse painting. Paraffin wax treatments for the hands and chair massages were also offered, and Overlook Medical Center’s stroke neurologist, Dr. Gary Belt, gave a presentation and answered questions.
Survivors and Caregivers
Connecting and networking were especially appreciated by survivors and caregivers alike. Sister Mary Ann Peters, a survivor from Watchung, explained, “I have enjoyed talking to other people who’ve had my experience with a stroke, with losing friends and with people treating you differently. You don’t get it unless you’ve walked the walk, and that’s why being here is so nice, because the others have been there or are still there, and they know.”
Bill Dailey, a survivor from Fort Lee, recalled the history of three years ago, as he noted, “We have a very active stroke support group at Atlantic Rehabilitation in Morristown. We were approached by the management of the acute part of the hospital, that this camp would take place. The organization in Peoria had never been east before; we were gonna be the first camp that they did. So we wanted to give it a shot.” Dailey added, “I believe it’s more than doubled in size in attendance, which is a testament to the job that they’ve done. I think it’s brought some people out of the darkness.”
Dailey has shared his own experience as a survivor to thousands of people. He added “I would encourage people to find stroke support groups near where they live, to be with their peers, to realize they’re not alone.”
Roy Bampton, a survivor from Morristown, summed up his experience, saying “We had a bonfire and we roasted marshmallows; I’d never done that. I went to watch folks swimming. I liked visiting with all the other people. This is one of the best experiences I’ve ever had!"
Debi Deary is a survivor from Verona. She explained with much enthusiasm, “This is my third year here. The minute the form comes out and deposit requested, I pay in full because I don’t want to miss it.” Deary added, “Not only is it fun, but you’re with people who get you.”
Deary went on to share, “I had my stroke in January of 2011, so it’s been 5 ½ years. The doctor said I wouldn’t walk for two years, and I said, ‘That’s not gonna happen. I’m 59 years old, I’m walking.’ I walked out of rehab after three months. In seven months, I was allowed to drive again.”
Deary added, “This camp is phenomenal, that’s all I can say. I will never miss it in the years to come.
Eric Trautmann is a caregiver who attended the camp with his wife Mary, a stroke survivor. They live in Denville, NJ. Trautmann recalled, “My wife had her first two strokes in 2005 and got out of the hospital five days before our wedding. She went up to Kessler for rehab, because she wanted to do the hokey pokey at the wedding, and they helped her practice dancing as part of the rehab.”
In terms of finding help, Trautmann explained, “It took me nine years to find a support group for caregiver support of stroke survivors. That support group is wellspouse.org. It’s international, and we meet monthly in northern NJ.”
Trautman also mentioned, “Through Stroke Camp we found a survivors’ support group in Morristown Medical Center. If it wasn’t for Stroke Camp, we wouldn’t have found it. Finding a group in our age range was especially tough. There’s not a lot of support for the twenty, thirty and forty year-old survivor and caregiver, and this stroke camp just fits that need, so it’s a godsend.”
Trautmann added, “Have you heard the old saying, that if you’re in a plane and the oxygen masks come down, you put yours on first, then help the person with you? It’s the same thing with caregiving. You have to make sure you’re healthy and in the right frame of mind to take care of yourself or whoever is ill.”
Monica Vest Wheeler is a volunteer administrative assistant for the camp and has written books about coping with emotional challenges of brain related illnesses and diseases. She documents the camp activities with her camera and noted, “I love capturing the faces of the survivors and the caregivers as they’re transformed. I’ve seen folks singing for the first time since their stroke; some can’t speak, but they find they can sing. Couples come to realize a better understanding of each other. I’ve seen families saved by the camp, because they’ve learned more about each other and themselves.”
Wheeler added, “The photos I shoot are so important. These folks don’t see themselves as beautiful -- they don’t see what I see. But I do a slide show at the end of each stroke camp, and the survivors are stunned when they see themselves, to see how good they look, how big their smiles are. Some of these couples haven’t had photos taken since the stroke. I’ve also been told from those who have issues with short term memories, how important the photos are to preserve those memor
The History of Stroke Camp
Stroke Camp is a non-profit organization based out of Peoria, Illinois, started in 2004. The organization held one weekend retreat designed for a local support group in the area that year. Lauren Kramer, director of operations, explained, “Our executive director, Marylee Nunley, and her husband John, who had a stroke in 2001, recognized there really wasn’t anything out there for long-term stroke survivors and their caregivers. She and her sister had a history of doing camps for children with cystic fibrosis. They created one weekend retreat in 2004.” From there, the reputation grew and the non-profit organization was founded in 2007, to service camps across the country. Kramer continued, “Last year we did twenty-three camps, and we’re on track to do twenty-nine this year, growing every year.”
Kramer explained the funding: “Generally the cost is $20,000 -$25,000 per camp, depending on the facility’s fees. The sponsors, in this case, Atlantic Health System, Overlook Foundation, Genentech and Penumbra, financially support the weekend, and the survivors and caregivers pay a fee of $125 for the weekend.
“We designed the activities around four things we like to focus on: education, socialization, relaxation and support. Many of those things are done informally, through interactions with one another throughout the weekend. We had formal education time this year with a neurologist who came and spoke. But we have that informal education in our support groups, where the survivors are in one room and the caregivers in another. They’re supporting each other and sharing ideas, always continuing to improve and find new therapies so they can continue to make gains even years after their stroke.”
Kramer added, “We have a lot of fun, laughter and silly games. Survivors will say, ‘It’s the first time I forgot that I have a disability, since my stroke. I felt normal. People didn’t look at me funny because everybody understands.’
“The theme this year is “The Awesome 80’s!” We play games related to the theme, and always incorporate teams and active participation by everyone. Last night we had Pac-Man cutouts of posters. We divided up into teams, with survivors and caregivers on different teams. For some, it’s the first time they’re not glued to the side of their loved one. You can see the hesitation at first, and then you see people break out of their shell and realize ‘I don’t have to be right there. I can enjoy myself and know that my loved one is close by, but we can have a good time on our own.’”
Kramer explained that there is another division within the organization, called Strike Out Stroke, promoting an awareness campaign with minor league and major league baseball teams across the nation. The goal is to educate people in recognizing the symptoms of a stroke, to go to the hospital in a timely manner to minimize the disability after a stroke. Kramer noted “There are over 800,000 new strokes in America every year. About 120,000 of those people die. Stroke is the leading cause of adult disability. More women die from stroke than from breast cancer.
Kramer shared that if you suspect someone may be having a stroke, to do the F.A.S.T. exam:
“F stands for face. Ask the person to smile. If one side of their face droops down, there’s an 80% chance the person is having a stroke.
A is for arms. Ask them to close their eyes and raise their arms. If one arm falls down or can’t be lifted, there’s an 80% chance they’re having a stroke.
S is for speech. They may have mumbled speech or they’re not able to get words out, or they may look at you and seem scared or confused because they don’t understand what they’re being asked. Ask them to say a simple sentence, and if their response does not seem normal, there’s an 80% chance they’re having a stroke. And if any one of these is abnormal…
T stands for time. 1.9 million brain cells are dying every minute during a clot causing a stroke. Call 911 immediately so the paramedics will call the hospital and the stroke team will be ready accordingly. Time is critical. Once the brain cells die, they don’t come back.”