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.