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Stroke Camp: Rest, Relaxation and Renewal




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STROKE CAMP: REST, RELAXATION AND RENEWAL By Celise Downs



Smores. Sleeping bags in pup tents. Fireside stories and

songs. Brave souls going polar bear swimming in a freezing

lake at dawn. These are the memories I have of going to camp.

But the camp I recently attended was different. At this camp, I

was surrounded by survivors: stroke and spinal cord injury

survivors. 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 of rest, relaxationand play time. Kay Wing, owner and

founder of Swan Rehab, which specializes in stroke and brain

injury rehabilitation, wanted to host a camp that was No work,

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I teach a week long class at NAU every year for the Physical

Therapy students, says Kay. We have stroke survivor volunteers

for the students to treat. The patients are there all day long,

and rotate between various therapeutic activities. Everyone has

such a good time that its like camp. It made me realize how

hopeless a permanent disability can seem to both the survivor

and the caregiver. Just the week of this class gave people new

hope, a change of scenery, and the caregivers a rest from the

constant responsibility. I thought this type of hope needed to

be available to a wider community of stroke survivors and their

caregivers. Only, I wanted it to be just a fun camp.



Jim Koeneman, President of Kinetic Muscles and co-sponsor of the

event, agrees. Through Kay Wing and our customers, we became

aware of the tremendous need that stroke survivors and their

caregivers have for recreational opportunities. Spinal cord

injury survivors were included for the first time after a

serendipitous encounter with Amy Rocker, Community Relations

Director for the Arizona Spinal Cord Injury Association. The

woodsy, rustic atmosphere and hotel-like accommodations offered

Camp attendees a multitude of activities to choose from: nature

walk, arts and crafts, bingo, yoga, a lecture on fishing, indoor

volleyball, and a massage or acupuncture. The group attended a

mixer and learned about meteorites from guest speaker John Salza

on Friday night; and was allowed to sit in during the Phoenix

Boys Choir music rehearsal Saturday morning.



It was here, at this special camp, where I learned what it meant

to be a survivor:



1) Change is gonna come. Some of the simplest daily activities

we take for granted are the first things a stroke and spinal

cord survivor have to re-learn. Not only is the survivor

affected, but loved ones are, too. For the first year after his

wife, Susan, got home from the hospital, Jack Fuhrers daily

routine was simply to get through the day and observe her

daily therapy sessions. Tending to Susans basic needs was hard

physical work because she was so profoundly paralyzed, he

states. Chang Bae and his wife, Kim, who were invited to the

camp through the American Heart Association, still cope with

difficulties like not being able to communicate well and

rapidly. And the physical impairment prohibits certain

activities that theyre trying hard to get back. Ron and Nancy

Wheelens 14-year-old daughter is handling the new routine, but

is frustrated and tends to be short-tempered at times.



2) It really does pay to have insurance. Insurance companies

have gotten a bad rap for years. So much so that a couple of

movies have been made to drive the point home that they have a

habit of leaving their members twisting in the wind. Like a

coin, theres going to be two sides with insurance companies:

the bad and the good. Jack Fuhrer feels he and Susan are among

the fortunate few who have had good, hassle-free insurance

coverage for a several million dollar illness. They were

assigned a supportive and helpful case manager courtesy of

Cigna. And an uninsured friends tragedy a few years earlier

caused him to buy long term care insurance. Consequently, there

are still a lot of deductibles. Ron Wheelen, whose wife, Nancy,

suffered a stroke in a hospital in June 2004, states that

overall, there was $3,000 to $4,000 not covered by insurance.

The hospital visit was $500 out of pocket. Although he didnt

have to pay it, Ron said that the helicopter ride from one

hospital to another was almost $12,000. Taxi, please.



3) Remember when?... Family members birthdays. The day my

boyfriend popped the question. The day I got married. These are

the special occasions Im going to remember for the rest of my

life. For a stroke and spinal cord injury survivor, the day

their life changed forever is something theyre not bound to

forget. Kim Bae, February 5, 1999; Susan Fuhrer, Sunday June 23,

2002, 9:15 a.m.; Kenny Baker, August 13, 1999; Terrible Tom

OBrien (whos not terrible at all, but a shameless flirt),

Monday May 27, 1996-Memorial Day; Susan Wheelen, June 2, 2004,

6:30 p.m.



4) Theres no such thing as limitations. Just because someone

walks with a limp, wears a brace on their leg, or gets around by

wheelchair, doesnt mean theyre completely helpless. Diana

Partain is an occupational therapist whose methods of therapy

include driving rehabilitation and expressive art. You dont

have to give up your hobbies or your life after having a

stroke, she says. You just have to find another way to do

them. And in the words of Terrible Tom OBrien: I have two

eyes, two nostrils, two arms and two legs. If one doesnt work,

I still have the other one. Amen.



5) Support, supportand did I mention, support? The dream of

seeing my work published has been a goal of mine ever since I

started writing in the seventh grade. I not only had to believe

it for myself, but I needed to have someone else believe in me,

too. Don Price broke his neck and sustained 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 family and friend

support, but the best help in adapting to my disability came

through peer mentorshipmeeting others who had a similar

disability, and learning from them. Once I spent time with other

quads, I realized that they were out in the community working,

playing, dating, driving, traveling and having fun. So I knew I

could, too. They supported me; we supported each other.



6) Celebrate the victories. Sixteen stroke survivors and two

spinal cord injury survivors attended the Stroke Camp this year.

The most inspirational person I spoke to was the youngest of the

group, and was neither one of those. 24-year-old Laurel Murray

survived an encounter with a drunk driver. She was pronounced

dead at the scene for ten minutes. The doctors told her she

would never walk again. What do they know, she scoffs. The

brain damage she suffered is comparable to that of a stroke, her

speech is slow and meticulous, her gait is even slower, and

shes determined to do things without help. But shes walking.

So stick THAT in your stethoscope and smoke it, you overpriced,

pessimistic 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. I still

get chills thinking about those young boys, some as young as

eight, opening their mouths and hearing this almost supernatural

sound emerge. I think about 12-year-old Collin, a member of the

choir, who was born with no arms (stumps) and no legs (stumps

fitted with suction-cup type prosthetics). And yet he was still

wholly accepted by his peers. Those boys will grow up and never

look twice at someone with a physical disability because of

Collin. Getem while theyre young, thats what I say.



Ive been in the medical field for several years now, but only

in the form of a desk job. As a medical biller, I sit at a

computer all day and register members. I have no 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 simultaneously humbled and inspired. My life, my

daily complaints, seem so small compared to what theyve

suffered and what they still struggle to accomplish. For a

moment in time, I was allowed a sneak peek into their world. We

rested, we relaxed, we had fun. We have been renewed. I recently

attended a camp. At this camp, I was surrounded by survivors.



STROKE FACTS:



~ On average, every 45 seconds someone in the United States has

a stroke.



~ Stroke is our nations No. 3 killer and a leading cause of

severe, long-term disability.



~ African-Americans, American Indians or Alaska Natives, and

Mexican Americans have a higher than average risk of getting a

stroke.



~ Recent studies indicate that the risk of stroke may be higher

in women during pregnancy and the six weeks following childbirth.



~ Each year, about 700,000 people experience a new or recurrent

stroke. About 500,000 are first attacks and 200,000 are

recurrent attacks.



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



~ African-Americans have almost twice the risk of first-ever

stroke compared to Caucasians. The age-adjusted stroke incidence

rates (per 100,000) for first-ever strokes are 167 for Caucasian

males, 138 for Caucasian females, 323 for African-American

males, and 260 for African-American females.







To see pictures from the July 2005 Stroke Camp, go to

www.swanrehab.com.



Copyright 2005 Celise Downs











About the author:

Celise is a Young Adult fiction author and owner of Gemini Mojo

Press. She currently has two books out and is working on a teen

series. Check out her Young Adult Fiction with a Twist at

www.GeminiMojoPress.com.



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