This story first appeared in How We Care, a weekly newsletter by Spotlight PA featuring original reporting and perspectives on how we care for one another at all stages of life. Sign up for free here.
Life after a stroke can strain the people who experience them and their caretakers.
Survivors of strokes, which occur when blood is blocked to part of the brain, can lose their mobility and balance, have trouble swallowing, and struggle to complete daily tasks like cooking or grooming. Recovery is hard work, and often isolating.
This is why earlier this summer, 21 stroke survivors and caregivers went on a weekend getaway to the Crestfield Camp and Conference Center in Slippery Rock. Campers enjoyed nature, got pampered, and built friendships with others navigating similar challenges.
The camp is one of about two dozen put on every year through the United Stroke Alliance’s Retreat & Refresh Stroke Camp program. UPMC occupational therapist Stacey Mlodzianowski brought the program to the Pittsburgh area in 2016. In this interview, which has been condensed for clarity and length, Mlodzianowski told How We Care that with the support of staff and volunteers, participants can let go, enjoy themselves, and prioritize their well-being.
Spotlight PA: What inspired you to bring stroke camp to UPMC patients?
Stacey Mlodzianowski: I attended a Retreat & Refresh Stroke Camp in New Jersey, where I originally am from, before moving to Pittsburgh. I volunteered, and it was an incredible, amazing weekend. When I moved to Pittsburgh and specialized with stroke survivors, I realized that Pittsburgh needed a Retreat & Refresh Stroke Camp. So I was able to talk to some of the coordinators at the United Stroke Alliance, and I was also able to get a grant request through the UPMC Rehabilitation Institute to have UPMC host our camps every year.
What kinds of things do people do at camp?
We have a few different breakout sessions throughout the weekend where survivors, caregivers, and volunteers discuss all the ups, the downs, the challenges, the barriers, and the successes of stroke recovery. But we also do a lot of crafts, entertainment, just socialization. And we have a climbing wall, like a rock wall, that everyone is able to try out, even if it's just a step or just a hand.
And we have a pool. We have golf cart rides around the camp facility. But everything is adaptable, there's always modifications that can be made. And we do whatever we can — from the coordinators’ point of view, and also the volunteers’ — to ensure that people’s experiences are positive and exactly what they want to get out of the weekend.
The United Stroke Alliance has done about 300 camps since 2004. As an occupational therapist who specializes in stroke recovery, why do you think these camps attract so many people to the program?
A caregiver often finds themselves putting their needs behind others. After a stroke, a survivor might lose some social life or friendships, or some independence. So the weekend is to remember that self-care is important and essential in everyday life.
At our specific Pittsburgh stroke camp, we have a lot of returning campers who come year after year after year. A lot of the survivors and caregivers really connect and keep in touch and become friends. They find it healing to be able to support one another. So it definitely is a huge benefit because we get to grow the Pittsburgh community of stroke survivors and their caregivers. The camp also encourages that connection for the whole year, not just for one weekend.
Do you have a favorite memory from your years at stroke camp? Is there something really special that you could share?
I mean, it goes without saying that the rock wall is incredible. Obviously, there's a staff member from the camp that is belaying [operating the climbing system to help] the people. But it is incredible to witness.
I feel like most of the people that attend stroke camp probably have never climbed a rock wall in their life, even pre-stroke. I hadn't before stroke camp. Imagine the sense of accomplishment that you or I would have after climbing the rock wall. But then take away some of my strength or endurance, or my ability to walk without a cane. And the cheers are incredible. Having someone climb up that wall and everyone cheering them on is a really fun time to watch.
Then I’d say, on a more emotional aspect, we've had one stroke survivor who really loved to sing before her stroke. And when she had her stroke, she had a lot of difficulty with aphasia, which is difficulty speaking, to get the words out that you wanted to say. And one Saturday night, she grabbed a microphone and sang a song to everyone.
Just having little moments like that, to be able to just feel like you again and feel like you can really take the time to enjoy the little things that maybe you haven't had a chance to participate in before or since the stroke. Those moments really, really are my favorite memories that I have of the weekend.
One of the things I like about the stroke camp is that it's for both survivors and caregivers. Caregiving is demanding, so with stroke camp you’re also filling the caregiver’s cup.
I was helping a survivor during one of the activities on the weekend. And since I was helping her out, her husband was able to go for a walk. And later that night, he thanked me and was like, “You know, there's not very many times where I can comfortably just get away and have some me time without constantly worrying about what she's doing or what she needs, or what I can be doing better to help her.”
He could just go for a simple walk or take a shower without thinking about it. Or a caregiver is able to eat their meal while it's warm, since usually they're cutting the food for their loved one or feeding their loved one. So that definitely goes a long way.