Sunday, June 14, 2020

What is a Stroke Camp?


MaryLee Nunley of Peoria, Illinois, a caregiver, shares what it’s like to attend stroke camp with her husband John Nunley, who was 55 at the time of his stroke. Now married 24 years, Marylee is the founder of the non-profit organization United Stroke Alliance and is currently head of its Stroke Camp division.

After her husband had a stroke, this caregiver founded a nonprofit stroke camp, which offers support and reduces stress for both 
caregivers and stroke survivors.

Saryn Chorney, an independent freelance writer for Readers Digest , interviewed Marylee for inclusion in their newsletter. What follows is that portion of the interview about Retreat & Refresh Stroke Camp.

I Went to Stroke Camp. This Is What It’s Like

Saryn Chorney
Updated: Jun. 04, 2020

What is a stroke camp?

Our first stroke camp

John and I started our first stroke camp in 2004 as a place people could go to relax and have fun. The first stroke camp location was at a church that I had attended as a youth and where my sister and her family had held camps for children with cystic fibrosis (prior to John’s stroke).

We had support from a local hospital and a local neurologist to fund the first camp. John had volunteered for a cystic fibrosis camp before we were married, so he knew what a difference it could make for people struggling with [similar] challenges. He was very glad to be entering into this new venture.

Stroke camp accommodations

Camps are held in a variety of locations, and accommodations vary from more of a camp setting all the way to hotels and retreat centers. Each unit for stroke survivors has a private room with a private bathroom. These are 3-day weekend retreats that cost $125 per person. They are located all over the country, although some have been delayed or rescheduled due to Covid-19.

The stroke camps are intentionally small in order for survivors and caregivers to enjoy an intimate setting where they really get to know each other. They are typically groups of 18-20 survivors, their caregivers (not required if the survivor is independent), and volunteers from sponsoring hospitals.

Hospitals, foundations, rehab centers, and stroke centers provide volunteers, and our non-profit organization provides a team to lead the weekend, for a total of about 60 people.
Meals, physical activities, and self-care

Meals are usually pretty nice and served buffet style; there is variety and dietary needs are met. Saturday night’s meal is always something special. Activities are adapted so everyone can participate, they include discussion, pampering, education, socialization, support, crafts, outdoor activities and more. There isn’t much “down time,” but naps are possible.

A lot of chatting takes place, crafts are available and board games abound. Some locations have boating and swimming, so there’s never time to be bored. Pampering time (pre-pandemic) includes mini-manicures, chair massage, warm paraffin hand dip, crafts, foot and leg massaging equipment, relaxation with music, sometimes yoga, and chair Tai chi.

I had been involved in church camps and another camp for disabled children [in the past], so I was pretty confident the retreat for our stroke friends would be fun and fulfilling. As my husband often says, he loves to greet campers as they arrive unsure what they’ve gotten themselves into.

John’s favorite activity is the pampering chair massages and paraffin hand dips, complete with a hand massage. He also just loves to sit quietly and visit with campers as they arrive, and see how they react to this unique event. My favorite time is the discussion circles with caregivers and our Saturday night show where we encourage dancing and offer a sort of a “date night” atmosphere for everyone.

At stroke camp, [people] dance in their wheelchair or with a cane, that doesn’t always happen elsewhere in society. Watching [the weekend] unfold is a beautiful thing. Each year we have a specific theme; 2019 was the Hollywood Red Carpet theme.

A break for stroke family caregivers

The thing that surprised me is how unique [our camp was]. Hardly anyone else was doing anything similar, so that’s how the nonprofit came to be. The Retreat & Refresh Stroke Camp has a 70% return rate, so we know that we’ve succeeded in putting together a good program.

The feedback we hear most is that people feel “normal” for a weekend. They enjoy the camaraderie and encouragement, and they often say it gives them a reason to keep working hard and trying as they see people many years post-stroke still improving.

Caregivers are happy to get a break from the day-to-day responsibilities since the group activities engage everyone. Not having to plan or cook six meals is also on the top of most caregivers’ lists.

The biggest challenge for me as a caregiver is that there is always something that needs to be done: always another task, appointment, load of laundry, prescriptions to be filled, pills to be counted out, meals to cook, nails to trim, housework to do and more.

I think the biggest relief for caregivers at the camp is that there are discussion times where caregivers meet with only caregivers and volunteers, and they are free to say whatever they want in a safe and confidential setting.

[editor note: and survivors meet with only survivors]

Sharing and having others understand and validate your journey is priceless. There are also a lot of tips that are shared and things are learned that you don’t hear at a doctor’s office. I learn something new at each and every camp I attend.

John and I married later in life and his stroke was 4.5 years into our marriage. I’d be lying if I didn’t say that much of [caring for a survivor] is like childcare, especially because of John’s aphasia, or language impairments, and cognitive deficits. I don’t treat him like a child, it’s the being in charge of someone else’s life that’s like childcare.

Much of it doesn’t show outwardly when meeting him for a short time in a social setting. The fact that he can’t read, manage any of his medical needs, medications, etc. puts me in the position of having to be in charge of a lot. We are still partners and I include him in whatever I can. We are in a good rhythm now, but it took years for us to adjust to the new way of life.

Stroke camp is for both children and adults

Strokes can happen at any age, even in children. Our youngest camper was six and the oldest 91 years old. For most camps, the average age is probably between 58-75. We do hold one camp we call our family stroke camp that includes young stroke survivors who are raising children. That age range is approximately 32-50.

They bring their children and we have time for the children to discuss and process what it’s like living with a parent struggling with the effects of stroke. It provides hope to this age group, and allows them to have fun and feel energized. [In general], we have more male survivors than female survivors at stroke camp.
That makes more female caregivers and fewer male caregivers.

[editor note: according to statistics, more women have strokes than men, yet our camp's turnout is the opposite.

I’ve learned a lot from male caregivers, though. One gender difference that I’ve noticed, though not universal, is that men just want to know how to get things done and do what needs to be done. We women seem to always second guess ourselves.

Stroke recovery is a lifetime of work

I always leave stroke camp revived, and that seems to be true for most our campers. At least that was the finding of a survey conducted by a research team, which published the results in a 2016 study in the journal Stroke.
I have learned that I’m not alone and there are people out there who understand stroke and the day-to-day challenges. Strokes take a lifetime of work as you continue recovery.

To be able to enjoy improved recovery for my husband, help others, and encourage them to keep trying has been the very best experience of my life. United Stroke Alliance grew from suggestions from our campers who wanted more people to know the signs of stroke, be aware of those signs, and help others to have a better recovery by responding quickly. That is how the program grew and the United Stroke Alliance could focus on prevention, awareness, and recovery.

—As told to Saryn Chorney

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