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

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.

Stroke is a leading cause of serious long-term disability. Nearly one in four stroke patients is disabled, and their daily care often falls to family members who are their caregivers. Women often assume the role of a primary caregiver, thus shouldering a high burden of the stress, according to a February 2020 study published in the journal Stroke. Stroke camps can help caregivers unplug, recharge, and get a break from significant stress. 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.

John Nunley United Stroke AllianceCourtesy United Stroke Alliance

A bad case of pancreatitis and a stroke

Early in 2001, John had a very bad case of pancreatitis (an inflammation of the pancreas) where he was hospitalized for four months. It was the worst case they’d seen at the hospital at that time, and he had all of the complications that could have occurred. Collapsed lungs, pancreatic pseudocysts, VRE (vancomycin-resistant enterococcus) infection, MRSA (methicillin-resistant Staphylococcus aureus), and abdominal infections that were eating up his pancreas.

Because of the infection, he was put in an induced coma for four weeks and had seven surgeries in two weeks as they attempted to clean out the infection and his pancreas. In fact, he was still recovering from this after he went home, and had an ostomy bag draining pancreatic fluid when he had a stroke.

A history of heart disease

Prior to pancreatitis, John had a history of heart disease, but he had worked out and gotten himself in good shape. He [exercised] six days a week and was strong and doing well when a routine ERCP (endoscopic retrograde cholangiopancreatography—scope to look for gastric problems) caused pancreatitis. There were seven days when it was touch and go whether he would survive, then came the stroke. It was a Sunday afternoon in September of 2001, and luckily I was in the room with him. He was lifting a television onto a shelf in our bedroom when he collapsed. He tried to get up and then fell a second time. I could tell that was very unlike him, so I helped him up and onto the bed. He had the look of a frightened child and when he tried to speak, it was just gibberish.

Recognizing the signs of stroke

I recognized the signs of a stroke and called 911. (The American Stroke Association recommends the acronym FAST, which stands for face drooping , arm weakness, speech difficulties, and time to call 911.) An ambulance arrived and transported him to a local stroke center; I followed in my car.

The stroke was confirmed right away, and it was caused by a clot to his left carotid artery. He had elevated cholesterol, but not a dangerous level, and he was a former smoker, but hadn’t smoked for over 15 years when the stroke occurred. I suspect this was partly caused by the elevated blood glucose levels from how sick he was with pancreatitis.

Stroke rehabilitation

Post-stroke, John had right-sided weakness and couldn’t walk right away, but luckily, within the week, they taught him to walk again. He had to be cautious because his right side has diminished sensation; he had to learn to watch his foot when he put it down for balance. He was a very good patient in rehab and wanted to get better, so his progress was good but speech was another story. He didn’t have any language at first, only gibberish and swear words (involuntary language). While he was in the hospital for four weeks, he had physical therapy, occupational therapy, and speech therapy.

Regaining speech

Speech was the most challenging and frustrating for him. It was such a learning experience for me, too. I learned how language works in the first place, and the work that goes into re-learning language. He couldn’t say my name and cried thinking that it meant he didn’t remember me. He did learn “my woman” which he called me for that first year until he could finally say my name. He had speech therapy for 2 two years, two to three times a week in an outpatient setting. When (health insurance) benefits ran out, I found a speech software and he continued to work very hard for two more years until he felt good conversationally. (Here’s how speech therapy helped a stroke survivor.)

Memory and thinking problems

His cognitive function was also compromised and continues to challenge us, but we have learned to accommodate. He can remember one or sometimes two requests, but if there are three or more, he can’t remember any of them. So we do things one at a time, and I leave simple notes when necessary. He also lost the ability to read. He can recognize certain words, especially nouns and action verbs, but sentences are a real struggle. He can identify something he wants to know about and asks me to read it to him. He can’t retrieve letters in order to spell, either. But he can speak and is conversational, and that was his goal.

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.

John and MaryleeCourtesy Marylee Nunley

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.

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. 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

Sources
  • Centers for Disease Control and Prevention: "Stroke Facts"
  • Alison McKenzie, PT, DPT, PhD, professor at Crean College of Health and Behavioral Sciences; Physical Therapy Chapman University, Orange, California
  • Paul Wright, MD, neurology specialist and assistant vice president of neurosciences at Nuvance Health, New York and Connecticut
  • JAMA Neurology: "Prevalence of Cardiovascular Risk Factors and Strokes in Younger Adults"
  • Stroke: "Stroke Camp Offers Emotional and Physical Relief for Stroke Caregivers"
  • Stroke: "Stroke Camp Provides Respite for Caregivers of Stroke Survivors"