Stroke Camp
WORTH TWP — The state's first Retreat and Refresh Stroke Camp was an opportunity for stroke survivors and their caregivers to take a break from what can be a long, tough journey through recovery and life after a stroke.
The three-day camp, recently hosted at the Crestfield Camp and Conference Center, was run by the Retreat and Refresh Stroke Camp nonprofit of Peoria, Ill., said associate director Larry Schaer. It brings retreats to different locations across the country.
Sixteen stroke survivors and 14 caregivers attended the retreat.
This retreat, the first in Pennsylvania, was sponsored by UPMC, according to Jen Shen, a physiatrist with UPMC who specializes in physical medicine and rehabilitation.
Its goal was to help families cope with this health condition.
“I think it gets very lonely for ... even the caregivers,” she said. “So we want to help build relationships. We want to take some burden off the caregivers.”
Debbie Grayburn, 62, of Cranberry Township looks after her husband, Kevin, also 62, who had a stroke almost two years ago.
For her, the hardest part happened just after his stroke, what she calls her “defining moment.”
She said, “My defining moment ... I was walking through the hospital when he was there, and this sounds like such a stupid thing. I heard my phone ring, and you think, for that half-second, 'That's Kevin calling to check up on me,' and it was like somebody sucker punched me because I realized that it wasn't him.
“I wasn't sure if he would ever be able to call and check up again.”
“We didn't know what was going to happen,” she said. “The doctors couldn't promise anything.”
For her, the stroke was an incredibly scary experience, one that now defines the lives of her and Kevin, in a way.
“Your life changes,” she said. “It's 'before stroke' and 'after stroke' and that's sort of how your life gets defined ...
“I was cleaning out some old files at work a few weeks ago, and I came across things before Kevin's stroke and memos I had written. And I sat there and (I thought) when I wrote that memo, my life was normal and I had no idea that in two weeks or three weeks, our life was going to change irrevocably. You just appreciate every day.”
But Kevin said he thinks he's made a good recovery. While he cannot drive semi-trucks anymore and cannot write with his dominant right hand now, Kevin can walk and talk after weeks of therapy.
The two have a strong family support system, but Kevin said it's still hard that he can't always do the hobbies he used to have such as gardening and being outdoors.
According to Shen, a stroke happens whenever the blood flow to the brain is cut off, which is considered a nontraumatic brain injury, she said. While there are specific risk factors that can make a stroke more likely, the injury can happen at any time and virtually any age.
Previous stroke camps have had survivors from as young as 4 years old up to 93, Shen said.“It does feel like we're seeing (strokes) younger and younger,” she said.The biggest way to prevent a stroke is to minimize the risk factors, which include high blood pressure, high cholesterol, smoking and uncontrolled diabetes.When a stroke does happen, it can impact the survivor in a number of ways, from minor effects to much more severe ones. Depending on what part of the brain is robbed of blood flow, the effects differ, Shen said.While speech and muscle movement can change, it depends on each individual case. Some people can walk after a stroke while others may require a cane or a wheelchair. Some people recover full use of their hands, if that is the affected part, and others may not.As Schaer put it: “If you know 1,000 different stroke survivors, you know 1,000 different situations.”Shen hopes survivors and caregivers feel refreshed after the camp. She also hopes they established new relationships and connections.Many times stroke survivors can feel depressed and isolated, often a result of not being able to return to their former lifestyle. Schaer said about half of all stroke survivors experience depression.And while a survivor can have a massive range of emotional responses, even in the same day, a caretaker can have just as many, Schaer and Shen said.“That's part of the recovery: emotions,” Schaer said. “The emotions are just all over ... That journey is hills and valleys.”For 59-year-old Steve Young, another stroke survivor, from Weirton, W.Va., the most important aspect that survivors need to remember is that they have a future after a stroke. That event does not mean a person will have to be in a wheelchair and face a lifetime of loneliness.“This camp is proof that there is a future after a stroke,” he said. “There is a future.”Young could not even walk after having a stroke on two successive days in July 2014.At the retreat he was climbing a rock wall at Crestfield's facility.After months of therapy and rehabilitation work, Young was able to return to his administration job with the VA Hospital in Pittsburgh in January 2015, he said.The most difficult part of his recovery was when he realized that he would need to change his psychological frame of mind. He would think of what he was able to do before his stroke and expect the same of himself afterward. He said there can be a big gap between those expectations and reality.But that does not mean a person should give up the pursuit of his individual recovery goals, he said. At one point during his own recovery, he surprised himself by being able to tie his shoes.“I didn't realize I could do that until I tried to do it,” he said.Young had lost muscle control in his left hand after the stroke, but he now has use back, he said.“Focus on working and don't give up,” he said. “Recovery comes a little bit at a time.”
