Stroke Camp: Rest, Relaxation, and Renewal

S’mores. Sleeping bags in puppy tents. Stories and songs by the fire. Brave souls going to “polar bear” swimming in a frozen lake at sunrise. These are the memories I have of going to camp. But the camp I attended recently was different. In this camp, he was surrounded by survivors: survivors of strokes and spinal cord injuries. The July 2005 Stroke Camp at Chapel Rock Church Conference Center in Prescott, AZ allowed stroke survivors and their caregivers, as well as spinal cord injury survivors, a weekend off , relaxation … and playtime. Kay Wing, owner and founder of Swan Rehab, which specializes in stroke and brain injury rehabilitation, wanted to organize a camp that was “No work, just fun.”

“I teach a week-long class at NAU every year for physical therapy students,” says Kay. “We have stroke survivor volunteers for the students to treat. The patients are there all day and alternate between various therapeutic activities. Everyone has so much fun it’s like camp. It made me realize how desperate a camp can seem. permanent disability for both survivor and caregiver. Only the week of this class gave people a new hope, a change of scenery and caregivers a break from constant responsibility. I thought this kind of hope should be available to a community broader range of stroke survivors and their caregivers. I just wanted it to be a fun camp. “

Jim Koeneman, president of Kinetic Muscles and co-sponsor of the event, agrees. “Through Kay Wing and our clients, we realized the tremendous need stroke survivors and their caregivers have for recreational opportunities.” Spinal cord injury survivors were first included after a serendipitous encounter with Amy Rocker, director of community relations for the Arizona Spinal Cord Injury Association. The rustic, wooded setting and hotel-like accommodations offered camp-goers a multitude of activities to choose from: nature walk, arts and crafts, bingo, yoga, a fishing lecture, indoor volleyball, and a massage or acupuncture. The group attended a mixing desk and learned about meteorites from guest speaker John Salza on Friday night; and was allowed to sit during the Phoenix Boys Choir’s music rehearsal on Saturday morning.

It was here, in this special camp, that I learned what it meant to be a survivor:

1) Change will come. Some of the simplest daily activities that we take for granted are the first things a stroke and spinal cord survivor has to relearn. Not only the survivor is affected, but also their loved ones. For the first year after his wife, Susan, returned home from the hospital, Jack Fuhrer’s daily routine was simply to “spend the day” and observe his daily therapy sessions. “Tending to Susan’s basic needs was hard physical work because she was deeply paralyzed,” she says. Chang Bae and his wife, Kim, who were invited to the camp through the American Heart Association, still face difficulties such as not being able to communicate well and quickly. And the physical handicap prohibits certain activities that they are trying to recover. Ron and Nancy Wheelen’s 14-year-old daughter is managing the new routine but is frustrated and tends to have a short temper at times.

2) It really pays to have insurance. Insurance companies have had a bad rap for years. So much so that a couple of movies have been made to clarify that they have a habit of leaving their members writhing in the wind. Like a coin, insurance companies will have two sides: the bad and the good. Jack Fuhrer feels that he and Susan are among the lucky few who have had good uncomplicated insurance coverage for a multi-million dollar illness. They were assigned a “supportive and helpful” case manager, courtesy of Cigna. And the tragedy of uninsured friends a few years earlier led him to purchase long-term care insurance. Consequently, there are still many deductibles. Ron Wheelen, whose wife, Nancy, suffered a stroke at a hospital in June 2004, states that “overall, there was between $ 3,000 and $ 4,000 not covered by insurance. The hospital visit was $ 500 out of pocket. “. Although he didn’t have to pay for it, Ron said the helicopter ride from one hospital to another cost almost $ 12,000. Taxi, please.

3) Do you remember when? … Birthday of family members. The day my boyfriend asked the question. The day I got married. These are the special occasions that I will remember for the rest of my life. For a stroke and spinal cord injury survivor, the day their life changed forever is something they are not destined to forget. Kim Bae, Feb 5, 1999; Susan Fuhrer, Sunday June 23, 2002, 9:15 am; Kenny Baker, 1999 Aug 13; Terrible Tom O’Brien (which is not terrible at all, but a blatant flirtation), Monday May 27, 1996, Memorial Day; Susan Wheelen, June 2, 2004, 6:30 pm

4) There are no limitations. Just because someone is walking with a limp, wearing a leg brace, or traveling in a wheelchair does not mean they are completely helpless. Diana Partain is an occupational therapist whose therapy methods include driving rehabilitation and expressive art. “You don’t have to give up your hobbies or life after having a stroke,” he says. “You just have to find another way to do them.” And in the words of Terrible Tom O’Brien: “I have two eyes, two nostrils, two arms, and two legs. If one doesn’t work, I still have the other.” Amen.

5) Support, support … and did I mention, support? The dream of seeing my work published has been one of my goals since I started writing in seventh grade. Not only did I have to believe it for myself, but I also needed someone else to believe in me. Don Price broke his neck and suffered a spinal cord injury in a diving accident in 1982. He was 18 years old. “It was a difficult adjustment,” he says. “I had great support from family and friends, but the best help in adjusting to my disability came through peer mentoring – meeting others who had a similar disability and learning from them. Once I spent time with other quads, I realized they were out in the community working, playing, going out, driving, traveling and having fun. So I knew I could too. They supported me, we supported each other. “

6) Celebrate victories. Sixteen stroke survivors and two spinal cord injury survivors attended stroke camp this year. The most inspiring person I spoke to was the youngest in the group, and it was none of them. Laurel Murray, 24, survived an encounter with a drunk driver. She was pronounced dead at the scene for ten minutes. The doctor told him that he would never walk again. “What do they know?” He scoffs. Her brain damage is comparable to that of a stroke, her speech is slow and meticulous, her pace is even slower, and she is determined to get things done without help. But she walks. So put THAT on your stethoscope and smoke yourself pessimistic expensive doctor!

The best part of this camp was the boys. All of our meals were blessed by the angelic voices of the Phoenix Boys Choir. It still gives me chills to think of those children, some as young as eight, who open their mouths and hear this almost unearthly sound. I think of 12-year-old Collin, a member of the choir, who was born without arms (stumps) and without legs (stumps fitted with suction cup prostheses). And yet his peers still fully accepted him. Those kids will grow up and never look twice at someone with a physical disability because of Collin. Get them while they’re young, that’s what I say.

I have been in the medical field for several years, but only in the form of a desk job. As a medical biller, I sit at a computer all day and register members. I do not have any contact with the member and have never had much contact with the physically disabled. After spending a day and a half with these eighteen survivors, I am humbled and inspired at the same time. My life, my daily complaints, seem so small compared to what you have suffered and what you are still struggling to achieve. For a moment, I was allowed a glimpse of her world. We rest, we relax, we have fun. We have been renovated. I recently attended a camp. In this camp, he was surrounded by survivors.

FACTS ABOUT ACV:

~ On average, every 45 seconds someone in the United States suffers a stroke.

~ Stroke is our nation’s third leading cause of death and one of the leading causes of serious long-term disability.

~ African Americans, American Indians or Alaska Natives, and Mexican Americans are at higher than average risk of having a stroke.

~ Recent studies indicate that the risk of stroke may be higher in women during pregnancy and for six weeks after delivery.

~ Each year, about 700,000 people experience a new or recurrent stroke. Approximately 500,000 are first attacks and 200,000 are recurring attacks.

~ Each year, about 40,000 more women than men have a stroke.

~ African Americans have nearly twice the risk of having a first stroke compared to Caucasians. The age-adjusted stroke incidence rates (per 100,000) for first strokes are 167 for Caucasian men, 138 for Caucasian women, 323 for African-American men, and 260 for African-American women.

To view photos from the July 2005 Stroke Camp, visit http://www.swanrehab.com.

Copyright 2005 Celise Downs

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