A Chance To Be Normal: Stroke Camp offers respite, renewal to survivors and caregivers

This year, August 16-18 2013, I helped with Retreat & Refresh Stroke Camp at the Carol Joy Holling Conference and Retreat Center in Ashland, near Lincoln, Nebraska. We were visited by Erin Andersen, news reporter, and Francis Gardler, photographer, from the Lincoln Journal Star. Following is the article Erin wrote about our camp. I have inserted some of the photos I took at this camp.

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 By ERIN ANDERSEN / Lincoln Journal Star

  

 People are always there in the beginning. To help. To talk. To laugh. To cry.

But as time passes, the visits decrease. It’s hard to find things to talk about. Your life is so different now. Nothing is the same ... and never will be.

After a stroke it’s the isolation that is hard to deal with, said Kathy Doak, whose husband, Mark Doak -- a former Nebraska football player and 1975 sixth-round draft pick of the NFL team in Washington -- suffered one in 2011.

You don’t do the things you used to do. Heck, you don’t even leave the house. It’s too much work. You’re so exhausted -- even picking up the phone to say "Hi" is overwhelming, Kathy Doak said.

So when stroke survivors and their caregivers -- typically a spouse, a child or a sibling -- are invited to attend the annual Retreat & Refresh Stroke Camp, their initial reaction is somewhere along the lines of: Are you nuts?

     Goldie (caregiver)                     Jackie (survivor) 

That is exactly what Goldie and Jackie Goldsmith of Lincoln were thinking when their doctors, nurses and therapists kept telling them that they “really needed to go to Stroke Camp.”

“We don’t get out and do a lot of things anymore -- because we can’t,” said Jackie, who suffered a stroke in November 2010.

“We kind of had to be talked into it (camp),” she said of their first camp experience in 2012. “Now we look forward to it every year. We meet some of the same people and meet some new people. We laugh a lot. It’s good medicine for you.”

Retreat & Refresh Stroke Camp -- as the name implies -- is a 48-hour summer camp complete with camp songs and slogans, arts and crafts, games, bonfires, fishing, canoeing and paddle boating.

“Survivors and caregivers have that perception: we can’t do this. That going to camp is like climbing Mount Everest,” camp director Larry Schaer said. “They have a perception of what they can’t do -- not what they can do.”

The camp is housed here at the Swanson Center

The Lincoln Stroke Partnership -- a collaboration among Bryan Medical Center, Saint Elizabeth Regional Medical Center and Madonna Rehabilitation Hospital -- and Retreat & Refresh Stroke Camp host the two-day event at Carol Joy Holling Conference and Retreat Center in Ashland.

This year’s camp, held Aug. 16-18, included 20 couples -- 10 stroke survivors and their caregivers -- 15 volunteers and five camp staffers.

Volunteers take care of everything, so caregivers truly have a weekend respite -- a weekend with massages, manicures, pedicures, facials and other spa-style pampering, along with campfire songs, stories and skits. A weekend where they don’t have cut their survivor’s food, help them use the bathroom, keep a watchful eye every second.

“Just to see the people and be able to enjoy normalcy and have fun with the survivor is wonderful,” Kathy Doak said.

A loving partnership turns into a full-time role of nurse, therapist, maid, cook, custodian and family CEO.

“When volunteers take over all the duties, when they take the load off the caregiver, it is just so relaxing," Kathy Doak said. "The stress reduction from that weekend is awesome.”

They have fun like they did B.S. -- Before Stroke -- before they were known as survivors and caregivers.

“Most events after stroke are not joyous," Mark Doak said. "But Stroke Camp is a celebration of life.”

***

Camp begins in a circle. In the middle are drums, tambourines and other music makers. Jenny Denk, a music therapist, gives each camper an instrument. Returnees know exactly what they want. Newcomers are wary.

But in minutes they forget to be shy, banging and shaking out beats as they introduce themselves, and call out their favorite fair food (in honor of this year’s camp theme: Meet Me at the Fair).

The ice is broken.

Survivors and caregivers divide into separate groups. Another chance to get acquainted -- this time with others living the same trials, tribulations, heartbreak and exasperation.

They share top of the mountain and bottom of the valley experiences.

Stroke survivors let go of some of the frustration, the anger, the resentment and self loathing. They hate being a burden.

“Everybody wants as close to a regular life as they had prior to the stroke,” Mark Doak said. “They want to be independent. They want to do things for themselves; not bother their spouse.”

Abilities they used to take for granted: getting a cup of coffee, making a grilled cheese sandwich, taking a shower, wiping your butt and killing the snake that slithers onto your front walkway in front of your wife and dog …

“All those things husbands just do -- now it has to be done for me,” Mark Doak said. “There has to be some anger for the caregiver. Some thought of: I didn’t sign up for this.”

Sentiments are the same for the survivor, but for different reasons.

“She is my keeper. I’m in the cage” Mark Doak said.

Kathy chokes on a laugh: “But what a nice cage it is!”

“I rattle the cage doors frequently and they never get open,” Mark said, not so subtly referring to his desire to drive again.

“I would gladly give the keys back if it was safe,” Kathy replied.

Across the hallway caregivers reluctantly put into words the tornado of emotions they have fought so hard to control -- and ignore.

It feels like you’re:

* A rubber band being stretched more and more

* A piece in a jigsaw puzzle, continually trying to figure out how it fits.

* A paper clip struggling to hold it all together all by yourself.

“A marble, ‘cuz I feel so much like I’m losing mine,” a few say.

Kathy Doak remembers her first stroke camp in 2012 and hearing the stories of returning caregivers.

“I thought: I’ll never get there. I’ll never get to the level of assurity that it will get better,” she recalled. “Everyone was so very encouraging. It was heartwarming.

One year later, Kathy Doak is now reassuring newcomers: It is OK to vent. It is good to laugh and cry, and glom on to the faith that this “new normal” can get better over time.

“Stroke camp is the ultimate release for feeling normal again,” Mark Doak said. “Stroke Camp is a safe place to break down the wall that everybody puts up and just go for it.”

* * *

Marylee and John Nunley of Peoria, Ill., held the first Retreat & Refresh Stroke Camp in 2001. The couple had always camped. Then John suffered a stroke. Marylee took care of him 24/7. A weekend off was an impossibility -- never mind the the prospect of camping again.

What if … Marylee wondered.

She hosted the first-ever camp inviting local fellow stroke survivors and their caregivers to a carefree weekend where disabilities and brain injuries were handled with such ease, it was like the old days -- Before Stroke. Where caregivers were the ones being cared for, pampered and treated like the heroes they are.

“That first camp was such a success that the next summer they held two camps, and the year after they held four camps,” Schaer said.

The camp focus is four-fold: educate, socialize, relax and support.

The 2013 camp at Carol Joy Holling Retreat Center was Lincoln’s third; and the 77th overall for Retreat & Refresh Stroke Camps held throughout the United States. All told, there will be 17 or 18 camps throughout the country this year. Next year, that number no doubt will climb to at least 20 -- odds are Lincoln will hold two camps. This year, six families were on waiting lists in case space opened up.

Stroke Camp is costly to put on, Kathy Doak said. All but a few thousand of the $20,000 price tag is funded by donations and fundraising. Stroke families are asked to pay $100 per person -- for some that is fantasy, which is why hopes are the Lincoln Stroke Partnership might raise enough money to provide camp scholarships.

***

Simply put, a stroke is a brain injury.

“A brain attack,” Kathy Doak said. “The effects are not just physical. ... Every part of your being is affected.”

“Your life and everybody else's is turned upside down,” Mark Doak added. “A stroke is forever.”

Which is why strokes are so isolating.

“There are 7 million people out there with strokes -- without having any connections and support other than family,” Schaer said. “Camp is a critical element of support for survivors.”

Bob Becker has attended all three Lincoln Stroke Camps.

He had his stroke April 1, 2010.

“A bleeder on my left side,” he said. An avid fan of television medical shows, Becker said he realized quickly the numbness and clumsiness in his right hand was a symptom of a stroke.

“Thank goodness for cell phones,” he said, noting that a freak outage had left landlines useless that day in Lincoln.

Becker called a family member: I think I’m having a stroke. When the family member started asking questions, Becker stopped him: “If you keep talking to me I might not be alive in a couple of minutes.”

An ambulance arrived a short-time later.

“By the time I got to the hospital I had slurred speech and was not able to use my right hand or leg.”

The recovery has been long and slow. But with persistence and perseverance progress is made.

“Watching people gives me hope,” Becker said, recalling the camper whose stroke left him unable to speak for five years. Last year, he got up and told a joke at camp. Fellow campers were laughing and crying at the same time.

In the 800,000 stories of stroke each year, Becker’s awareness is unique, Schaer said.

“Only 20 percent of people know the signs and symptoms of stroke," he said. “Eighty percent have no idea of the signs and the urgency of the matter.

“Only 20 percent of people having a stroke make it to the hospital within a three-hour window to receive TPA (a clot busting drug), resulting in minimal to no deficits.

“With 800,000 people a year having a stroke and with only 20 percent of that population getting to the hospital in time, that means 80 percent are losing a lifetime opportunity. Once that window of opportunity is missed, you don’t get a second chance.”

The symptoms sound straightforward:

* Sudden numbness or weakness in the face, arm or leg, especially on one side.

* Sudden confusion, trouble speaking or understanding.

* Sudden trouble seeing in one or both eyes

* Sudden trouble walking, dizziness, loss of balance or coordination.

But most people ignore the symptoms -- reasoning they are tired, stressed or getting sick. Many take an aspirin and a nap hoping it will just go away, Schaer said.

And if they are having a mini-stroke, a TIA (Transient Ischemic Attack), it will go away as suddenly as it appeared. But it will come back -- with a vengeance. Up to 40 percent of all people who experience a TIA will go on to have an actual stroke in the next 12 months. Nearly half, will have a stroke within two days of a TIA.

“Lack of understanding is a major issue. If we could fix that, hundreds of thousands of people could have minimal effects,” Schaer said.

Chuck Jones, administrative assistant at Stroke Camp, lost a cousin three weeks ago to stroke.

It started with a mini-stroke. Her words suddenly became garbled. Well-meaning friends told her to relax. She did. Her speech returned to normal. The next day she had a terrible headache. She took aspirin and a nap, and declared upon waking that she never felt better, Jones said.

“The third day she suffered a massive stroke and died that night.”

* * *

Stories of delay and denial are the bane of stroke survivors and families.

Nearly every survivor will tell you that whether they knew what was happening or weren’t quite sure -- they all held on to the belief it could not happen to them.

And sometimes stroke symptoms are not all that obvious -- at least not enough to feel like you need to head to the emergency room.

Jackie Goldsmith says hers began with her leg. Her husband noticed she was walking funny. Over the next two days, she relied on the strong stable arm of her grandson as she shopped.

“I was still walking, but it was like I was drunk or drugged or something,” Jackie recalled.

Her husband suggested they call the doctor. He ordered an MRI. Physically she was reeling a bit as she attempted to walk out of the medical center. They sent her straight to the hospital.

“After that I couldn’t stand,” Jackie recalled.

Lincoln’s Larry and Lori Obrist are both stroke survivors and caregivers. Larry had his stroke December 2005; Lori’s was March 2010.

“I pretty much knew and feared I was having a stroke, but I desperately did not want to believe it was happening to me,” said Larry Obrist, a retired mental health social worker at the Grand Island Veterans Hospital. “It just seemed like my leg was going to sleep.”

Back in 2005, administering clot busting TPA was not standard protocol -- especially if your stroke score was low, like his.

“I could walk, and talk; I had no vision or speech problem, but terrible weakness on my left side,” he said.

Today, he would have been considered a prime candidate for TPA.

To look at Obrist, you would think he has suffered no lasting effects. He knows otherwise.

His ankle gets spastic, his foot swells with fluid, his balance and agility are not dependable.

Lori Obrist’s stroke was different. A nurse, she didn’t see a need to rush to the hospital She had a TIA. Miscommunication and lack of understanding as to what was happening, resulted in her having a stroke. Larry Obrist can’t hide his frustration. He takes every opportunity to tell people about stroke.

“My two cents: Take the stroke education that you have learned and take it to your communities and families. If we can prevent one person from having a stroke (it) will have done enough. ... Do not let your family or the doctor take a TIA for granted.”

All things considered, Larry and Lori Obrist are lucky. But they could have been much luckier, if they had had been proactive and aggressive, he said.

Paul Eide and his wife, Bev Linder Eide, are relative newcomers to the world of stroke. This was their first camp.

Married just 10 years, both have buried their first spouse.

On June 19, 2012, Paul went in for shoulder surgery. Four days later he had a stroke -- a clot in his carotid artery.

The stroke left Paul with physical disabilities. But for Bev the biggest adjustment is emotional.

“His personality has changed,” she confided.

That’s a very common result of strokes.

Kathy Doak states it matter of factly: “Mark lost his filter after the stroke.”

Mark Doak had his stroke at 11:11 a.m. Nov. 11, 2011.

“I rode in ambulance 111, and was put in room 11 at the hospital,” he said.

“Guess what’s not my lucky number,” Kathy quipped.

The couple was on vacation in Florida when Mark fell over a plastic lawn chair. He figured he tripped. Kathy knew immediately it was something more.

“His speech was slurred. He couldn’t sit up,” she said.

It was about a year before he could really sit up on his own.

“I was a lump. Now I’m a sugar lump,” he joked.

Mark has always been gregarious and outspoken. He fills a room -- and we’re not just referring to his 6-foot-4, 300-pound frame.

While in therapy at Madonna he earned the name: “Captain Inappropriate.”

“I apologized for him a lot,” Kathy said.

These days he’s not quite as inappropriate but his humor teeters on the edge of risque. He likes to talk, and is not as attuned to social norms as he was Before Stroke. But his personality is a boon to fellow survivors -- he gets them out of their shell, gets them playing bingo, watching movies, living again. Mark and Kathy say survivors and caregivers need more than just one Stroke Camp a year.

Lincoln’s Joann Keller concurred. Camp gives you perspective, she said.

“When I went to Stroke Camp I felt like ‘Oh, I have it so bad.’ I felt so sorry for myself,” she said, referring to herself and her husband, Arnold Keller, who had his stroke in 2004. “Then I see other people and hear their stories and realize I don’t have it as bad as I thought. We are sitting pretty good.

“It is the most enlightening best time. It is probably one of the most most rewarding events I partake in. In 48 hours, you become really wonderful friends. You do not care to leave. You feel like you have actually been loved and the love is very generous.

“It is so rewarding. I feel like I am in a good place today because it gave me a good shot.”

Reach Erin Andersen at 402-473-7217 or eandersen@journalstar.com

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