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.
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—Sarah Boden, for Spotlight PA
