For 17 years, the Retreat & Refresh Stroke Camp has made stroke survivors and their caregivers feel normal again. That sentiment makes me want to cry. Nothing feels more devastating than a stroke. One minute you feel normal. The next minute, the entire world crumbles around you . . . whether you are the stroke survivor or the caregiver.
Feeling Normal again
Feeling normal sounds so easy. Yet, it’s not that simple. When the stroke survivor lies in the hospital bed in critical care, s/he often feels helpless. So much has been stripped away at that time, s/he may feel like only the bare bones of life remain. In fact, for 90% of those who survive, they will never become the person the were before the stroke occurred. That change requires the caregiver to transform for life as well.
The Retreat & Refresh Stroke Camp understands what those changes mean. Founder, Marylee Nunley, became a caregiver in 2001 when her husband, John, had a stroke. After reading about a stroke camp in 2003, Marylee found a new calling. In 2004, she started the Retreat & Refresh Stroke Camp.
The stroke camp staff and sponsor volunteers spend the entire weekend pushing wheelchairs, understanding stroke survivors might need a hand with a napkin when they can’t feel the food on their face, and letting the caregivers have some time for themselves. “We’ve all been through a stroke so it’s not traumatic for us. Everything that we do we adapt in someway so everybody can participate if they want to,” stated Marylee.
When asked about what attendees get from participating, attendees often reply, “The Stroke Camp has done everything to make us feel normal.”
Do You Have a Long Weekend?
Stroke Camp happens over a long weekend — from Friday to Sunday — and focuses on four pillars:
Although every year has a theme (like a cruise ship, the 50’s, 60’s, or 80’s), all camps connect their attendees through their activities. Marylee has thought carefully about each piece. Every camp starts with a drum circle led by a music therapist. Considered the heartbeat on the weekend, it can engage everyone. No matter how survivors have been affected, they can drum with one hand, they can beat if they cannot speak, or they can shake a maraca from a wheelchair.
A discussion group follows the drum circle, and this is where caregivers and stroke survivors are separated. There is some angst here. No one knows the specific likes and dislikes of the survivors than the people who care for them. The caregivers don’t want to go away from their loved ones; neither do the survivors want a separation. But with careful urging from the volunteers, the split happens. By the next day, the caregivers and stroke survivors seem to let go of each other. By then, the caregivers have seen how competent the volunteers truly are, and people are glad for a short break from one another.
The discussion groups rely on people’s ability to simply listen. Each person talks about only his/her self. What is said in the discussion group stays within the group.
On Saturday, campers can do mini manicures, chair massages, paraffin dips, foot massages, and crafts. Some places have zip lining and rock wall climbing, hiking, or fishing in adapted boats. The leaders might run a movie or set up a Wii if people want to play a game.
Education comes at 4:00. Significant changes in adaptive equipment might be reviewed. Maybe a neurologist gives some new information. Perhaps a Stroke Coordinator shares some observations. Each camp has a different speaker. Sometimes the Stroke Camp gives its own presentation.
Is that Richard Simmons?
Saturday night the Stroke Camp has a really nice sit down dinner. “My husband or wife is in a wheelchair, and going onto to a nice restaurant isn’t possible. It’s nice to have a sit down dinner where we can feel it’s date night,” is often told to Marylee.
One year the Stroke Camp had an 80s theme. Olivia Newton-John’s music, Physical, played in the background. A volunteer, dressed in a Richard Simmons costume, came onstage and the entire house rocked! Everybody just went crazy! They knew Richard Simmons. Talk about laughter! Per Marylee, stroke survivors and their caretakers don’t laugh enough. They don’t play enough. As a group, the stroke community is too darn serious. Stroke Camp changes everything by lightening up the mood.
Much more happens at camp. If anything, it re-energizes stroke survivors and their caregivers. Jan Jahnel* learned something important from two newbies.
“I was asked to go pick up a stroke survivor and caregiver,” related Jan. “They were flying into Peoria, Illinois from Texas. The man was a stroke survivor in his 80s. His 80-year-old wife made the arrangements for a trip to a town they didn’t know, to attend a stroke camp they didn’t really know anything about, and they were to picked up by a stranger. They so wanted something that was going to help them. And Stroke Camp did. It has helped a lot of people over the years.”
Aphasia is a communication disorder that affects around 40% of stroke survivors. If the stroke survivor is not recovered by the third month of having aphasia, the National Aphasia Association’s website says that you will probably have is for life.**
As noted above, John Nunley has aphasia. When asked how the first Stroke Camp impacted him, Marylee stated, “I think John felt uplifted and connected. He also was proud of himself. John is ambulatory, but he has aphasia. Especially during that first camp. He could tell people, 'I couldn’t do that three years ago, but I can now.' John is uplifting. It’s always been important to him to encourage others. He tells people to keep working hard and do their very best.”
Today, John can lead a conversation, but he still struggles with retrieval. For example, Marylee told me of something that she had just experienced.
“He wanted to tell me some thing last night and he couldn’t come up with the words. I was late getting home and I asked him about getting lunch.”
He said, “I had one of those things.”
I said “OK, what was that. Was it a sandwich?”
“No. I had one of those things in the frigeray.”
“Something in the refrigerator. Some leftovers?”
“No. It was one of those things.”
“I opened up the refrigerator. A friend of ours sent us some Fairlife protein drinks. John couldn’t think what to call it. What I told him what it was and he said 'yes.'" I said, “Kevin sent us those.”
“That’s how aphasia affects us. If I ask him a question, he may be able to answer it, he may not.”
Marylee and Jan understand that aphasia is frustrating for both the stroke survivor and the caregiver. That’s one reason that the camp offers karaoke. Many stroke survivors who can’t speak can sing. That’s because singing comes from a different part of the brain.
One stroke survivor who has come to camp actually sung the national anthem at a baseball game. He has a beautiful voice. He can sing and the words come out perfectly.
Stroke survivors don’t have to get onstage to participate in karaoke, though. Someone will just pick a song and then a microphone goes around. In 2021 the Stroke Camp’s theme was tropical. Volunteers dressed up as Gilligan’s Island survivors. The Gilligan’s Island song played and volunteers went around and had everybody singing to the Gilligan Island song. Volunteers know that music is not just for dancing or for relaxation.
“Singing is always a lot of fun, and it’s very therapeutic because a lot of these people can sing. They can participate, and it’s really a cool thing to see them get involved,” said Jan.
The Stroke Survivors
Purpose. Stroke Camp gives attendees a reason for a living. There’s one particular conversation Marylee had that really hit home. Someone called her and wanted to register for camp two or three years ago.
The caregiver relayed, “I just need to get registered so that I can tell him we are registered for camp. When we go to camp, he is encouraged. He is willing to go back for some therapy and try harder. Then we get your memory calendar. We look through it and remember all the beautiful moments that we had in camp. Then we get through the holidays. After the holidays we can begin talking about registering for camp for next year. Once we have registered for camp, we can start talking about the excitement and who we think we will see at camp. You have no idea that gives him purpose. It gives him connection to keep trying and handling life.”
That interesting feedback gave Marylee and Jan something concrete evidence that they were on the right path. Jan says it is more than stroke survivors rejuvenated by attending camp. Caregivers also have something to look forward to every year.
Caregivers Have Fun, Too
The caregivers can let go and enjoy themselves. They understand that volunteers can take
care of their loved ones. What an inspiration to know that it doesn’t always have to be them. Having someone else who can care for stroke survivors gives caregivers a break. Maybe they can go get their nails done. Or maybe they can have lunch with friends at the camp.
Connections are key for these people. Caregivers feel (finally) that they are not alone. Caregiving is isolating. Caregiving is lonely. The things they learn a camp are all things they can’t get at a medical appointment.
For example, Sierra Mist has come up in conversation at camp. An attendee gives her husband a half can of a Sierra Mist before church because it keeps him from drooling. It has a small amount of quinine it. People don’t talk about those small things when going to the doctor. The type of tips and tricks the caregivers learn from each other are useful.
Giving, Loving, and Caring-hearted Volunteers
When it comes to volunteering, it can be anyone who wants to spend time with the stroke community. Volunteers don’t have to have a degree. They don’t have to be in the medical field. Volunteers just need to be giving, loving, caring-hearted people who don’t mind giving up the weekend.
In the beginning, Jan was a stroke coordinator. She was responsible for staffing 8 to 10 (no more than 12) volunteers for camp. Each of the sponsors is to provide an RN for the weekend. so that can handle any questions beyond what the camp staff would be able to know. Most of the time the camp has a group of professionals that volunteer from the hospital. The camp has also had retired individuals, Sunday school teachers, Girl Scout leaders, crafters, and others that love to give back and help other people. The key is there must be one medical person, although there are usually more than one.
Sponsors Foot the Bill
At first, Marylee funded the camps themselves. As the camps grew in number (there were 28 camps before COVID-19 broke out) people began to ask if there were some way the camps could come a little closer to home. That started Marylee to start doing cold calling . . . something she didn’t enjoy. Over time, they gathered more information on what the stroke camp did so they had strong results to share. Now, they don’t do cold calling, but follow up on warm invitations. Perhaps a camper knows of someone at a hospital that may be interested. Usually they are primary or a comprehensive stroke centers.
The Joint Commission Certification for stroke is a hospital pursued accreditation and nationally awards a hospital ”designation for excellence in care of stroke patients.” One stroke center shared pictures of the stroke camp their hospital sponsored, that totally blew the commission away. They were impressed with the participation of the stroke nurse and other volunteers within their stroke community. They were amazed at the hospital support of camp and how it provided needed support of the caregivers and survivors outside of the hospital setting and in the community.
The Retreat & Refresh Stroke Camp provides everything that is needed for the camp including activities and food. All attendees must pay $150 the stroke camp. If they can’t pay that amount, they can submit for a scholarship. To date, everyone who has applied for a scholarship has received one.
COVID-19 shut down the camps in 2020. By 2021, the staff had 10 camps up and running again. It will probably take a couple of years before the Retreat & Refresh Stroke Camp is back to running 28 (or more) camps. To keep up to date on where the Stroke Camp will be, click here.
When asked what they wanted people who read this blog to remember after reading it, Marylee and Jan had the following thoughts.
“There is life after stroke. Don’t give up. Don’t think that your life is going to be like this. I’m old enough to look at stages of life, and even now, stages of post stroke. Even when you are in the critical stage — don’t give up. Look for resources. Reach out. A lot of people get lethargic and think this is just the way it is. Whatever is going on right now will not be going on a month or year from now. It will change and be different. So don’t get stuck in the quagmire of ‘Woe is me,’” said Marylee.
“Stroke recovery occurs throughout your lifetime,” commented Jan. “It’s not just physical therapy and occupational therapy. It’s socialization and trying new things. You need to get out of your comfort zone and move forward. I think stroke camp does that. It gives stroke survivors the opportunity to try new things like fishing, golfing after their stroke, zip lining — you name it. It gives them the opportunity to learn what others have done to recover and and get better. They can feel a sense of normalcy.”
Jan continued, “I think for the caregivers it’s the same thing. They have to be patient and just allow their survivors or their loved ones to go out and experience new things. Caregivers need a break. It can be overwhelming caring for [stroke survivors]. They just need to understand that this is a lifetime process after a stroke. There is lots that stroke survivors can learn years and years later.”
For more information contact the Retreat & Refresh Stroke Camp.
*Jan Jahnel was the stroke coordinator at St. Francis Medical Center, and was a neuro nurse for 25 years before that. Jan has since retired from St. Francis Medical Center and has become an employee of Retreat & Refresh Stroke Camp. She has been with the stroke camp since the start, and her insight was valuable to understanding the breadth of what stroke camp is to other people.
**Marcia Moran had aphasia for 3-1/2 years before she found an answer in an unexpected place. A chiropractor in her area did neurofeeback. The treatment has been around for almost 20 years, but most people have never heard it neurofeeback. For more information, contact Marcia at marcia@StrokeForward.com.
Marcia Moran survived her stroke in 2014. It was a carotid artery dissection that only 1-2% have. The doctors couldn’t explain why it happened. Since that time, Marcia has written a book, Stroke Forward: How to Become Your Own Healthcare Advocate . . . One Step at a Time. She has been featured in a book put out by Stroke Awareness Oregon, (Just Say “Yes” to Life!) Vol. 1 Stories of Thriving after Stroke. Authentic, vulnerable, and brave, 26 stroke survivors give hope to others who find themselves wondering if, “This is it for me.” In 2019, Marcia began going on podcasts to give people hope and encouragement. Marcia has recently become a Health and Life Coach focusing on only stroke survivors, their caretakers, and people with traumatic brain injury, or TBI.