|
|
|
MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.
|
|
|
|
|
|
|
|
Check Out the New Digital Version of Quest! |
 |
|
Game to Get Away
|
Online games provide an alternate world
in which to play, say gamers with neuromuscular
diseases. Here’s a primer of terminology,
gaming options, social tips and
info on how playing may affect muscles.
In addition, Kid Quest, page 69, provides
Internet gaming safety tips for kids.
|
|
|
|
|
|
Stories by Topic
|
|
|
|
|
|
|
|
|
|
|
 |
|
 |
|
| Counselor Matt
Lam (“Fat Rat”) gives a lift to
camper Jeremy Susenbach during the 2005 MDA
camp session at Camp Burnt Gin outside Columbia,
S.C. All photos by Wayne Irby, a 29-year volunteer
at the camp. |
Megan Jennings rarely sits still at MDA summer camp.
The 15-year-old is always on the move, nosing her wheelchair around
her cabin’s porch singing along to “Grease,” or zipping
over to the arts and crafts cabin to work on her costume for the dance,
or playing hide-and-seek in the flat, lightly forested, shady spaces
near the cabins.
If she does sit still, say while watching a power soccer
game, playing cards or waiting to get into the pool, she restlessly
powers her wheelchair footrest up and down, backscratcher in hand like
a royal scepter.
Nighttime is Megan’s favorite time to get around.
In the July darkness outside Columbia, S.C., she roams Camp Burnt Gin
doing what she calls ahshwa walking, which she says comes from
a French expression she heard once that means to wander without a plan.*
“It’s a very relaxing way to cool off,”
she explains in her gentle drawl, adding, “I have a tendency of
being a minimom. I like going around to all the cabins saying ‘g’night
y’all.’”
*Note: It's possible that Megan's "ahshwa"
comes from the French expression "au choix," which means "by choice."
Or, perhaps it refers to another French term, "à joie," meaning
"with joy." |
There are really no opportunities for “ahshwa
walking” back home in West Columbia, S.C., where Megan, who has
spinal muscular atrophy (SMA), is an active high school student interested
in everything from ballet to wrestling. As for having the freedom to
simply do what she wants, when she wants — well as they say, that’s
priceless.
That’s what MDA camp means to kids — freedom
from barriers, regular life and being different. Camp also means being
surrounded by a caring, goofy team of grown-up kids (MDA counselors
and other volunteers) who have a blast making sure each camper has the
best week of his or her year. |
| An Addicting Habit |
The MDA summer camp program, which celebrated its 50th
anniversary last year, serves
 |
| Kelli
Prather hopes for a strike, with encouragement
from Fat Rat, aka Matt Lam. |
some 4,200 kids with neuromuscular diseases
ages 6-21, in some 90 free weeklong summer camp sessions every year.
More than 5,000 older teens and adults serve as camp volunteers, including
about 300 medical staff. MDA staff and counselors assure that camp activities
are accessible and safe for all.
Each camper is assigned a personal counselor who attends
to the camper’s needs 24/7, from the personal and practical to
the wacky and frivolous.
You need someone to turn you over at night and figure
out how to transfer you into the pool without causing any discomfort?
You want somebody’s bed suspended from the cabin rafters? Someone
to cover themselves in peanut butter and let you spit peanuts on them?
Call an MDA camp counselor.
To qualify, counselors must be at least 16 years old
and physically able to lift and care for campers.
 |
|
Morgan
Harrell has been Megan Jennings’ counselor
for the past eight years. |
|
Volunteers are thoroughly screened — including
criminal background checks, health and reference checks, and personal
interviews — and provided with training in helping children with
neuromuscular diseases.
Megan’s counselor for the past eight years has
been Morgan Harrell of Columbia. Most of the year, Morgan works for
South Carolina Gov. Mark Sanford. Five days a year, she’s Megan’s
arms and legs and partner-in-crime.
“You can’t do without it. It gets in your
blood,” explains Morgan in the rec room/cafeteria during the 2005
camp, where campers are bowling, hanging out and listening to a CD by
local singer Jim Le Blanc, who performs at camp every year. Other counselors,
some of whom have been volunteering at Columbia’s MDA camp for
more than 30 years, emphatically agree.
Matt Lam, or “Fat Rat,” a Columbia fire
fighter, voices a common sentiment: “I’d lose my job before
I’d miss camp.” Other counselors confess they’ve already
done so. |
| |
| And the Winner Is ... |
 |
| Counselors
Ricky Northcutt and Jessica Milam gamely endure
being slopped by the Bad Egg. |
At times, MDA camp involves large quantities of
disgusting goo.
Kelli Prather, 9, of North Augusta, learns this firsthand
while playing the Bad Egg. (Kelli, a first-year camper, has SMA type
2.)
The Bad Egg isn’t really an egg, but it is bad.
Two hollowed-out watermelons painted white are filled by campers with
such delights as turkey gizzards, Alpo, salsa, pudding, syrup, ravioli,
watermelon innards, sweet and sour sauce, ketchup, relish, green beans
and ranch dressing. Yum.
The Bad Eggs are prizes for the boy and girl winners
of an Easter egg hunt (the camp’s weeklong theme in 2005 was “holidays”).
The winners each select a counselor to get a Bad Egg dumped on his or
her head.
As the girl winner, Kelli picks counselor Ricky Northcutt,
an easygoing practical joker from Cayce, S.C., who sells tow trucks
most of the year. Ricky, who’s been coming to camp for 23 years,
suffers the putrid splash and then, dripping and grinning devilishly,
heads over to give Kelli a big congratulations smooch.
Kelli’s counselor, Ashlea Osbourne of Kennesaw,
Ga., quickly throws a tarp over Kelli, protecting her chair. Ee-yew.
Gross.
Kelli thinks that’s the end — except in
Ricky’s mind, payback isn’t over. The
next day, Kelli finds her bed and rocking chair suspended in the rafters
of her cabin, with her stuffed animal still sitting in the chair exactly
as she left it.
She stares silently upward, dumbfounded. “Um,
may I ask a question?” she finally says politely. “Do I
have to sleep up there?” |
| A Place to Grow Up |
Megan is delighted by Kelli’s Bad Egg experience
(which she helped engineer), because she knows this is the kind of thing
that bonds kids to camp. She frets a little about kids she meets at
MDA events during the year who’ve never tried MDA camp.
For more about how to
sign up for MDA summer camp, see KidQuest. |
“I keep working on kids to come, but they won’t,”
she says. Some of their reticence may be due to fear of homesickness,
although that quickly passes, she says. “And I guess it can be
a little overwhelming, having all these people and all these (power)
chairs around.”
But a normal, healthy part of growing up is separating
from your parents, advises Arden Peters, a psychologist who ran MDA
family support groups in Wichita, Kan. Beyond all the silliness and
goo, camp stretches kids and helps them grow in confidence and self-esteem.
Plus, it’s a good tool for learning to handle
disability and finding support. “Kids at MDA camp open up to each
other in ways they won’t with anyone else,” Peters noted. |
| Zone Defense |
Explanations about the psychological benefits of camp
are lost on Jeremy Susenbach, 7, of Hickory, N.C.
Jeremy, who has Becker muscular dystrophy, and the other
boys in his cabin roam the camp as a pack, bristling with water guns,
accompanied by counselor-drawn wagons for those whose legs get tired.
 |
| Camp
nurse Jenna Livingston dances with camper Levonne
Croker, 13, of Cades, S.C. Levonne has Duchenne
muscular dystrophy. |
“The little boys all travel in a mob and
we just kind of do zone defense,” explains
counselor Jo Ellen Aspinwall of Offerman, Ga.
But their little boy bravado gets a serious test at
one of the major events of camp: the Dance. This year (as every year)
the dance hall has been transformed by the biggest grown-up kids around,
Charleston builder Andy Beall and his brother Thomas (aka Zombie).
Each year the Beall brothers load up a trailer with
thousands of dollars worth of decorations, all bought at their own expense.
They then spend days sequestered mysteriously inside a cabin, tacking
up black plastic sheeting, spray painting and assembling props. In the
past they’ve created a beach scene complete with buried treasure;
a ghost pirate ship (like “Pirates of the Caribbean”); an
exploding volcano; and 12-foot-high ants for the “A Bug’s
Life” theme.
This year’s dance theme is Halloween, and the
haunted house the Bealls have created is of Disney caliber.
Jeremy and his best buddy, Zachary Griffin, 7, of Rock
Hill, S.C., who has Duchenne MD — respectively costumed as Spiderman
and the Incredible Hulk — cling to the legs of counselor Chip
Raffine of Columbia. As Chip tries to move forward, the little boys
— sorry, superheroes — shuffle hesitantly behind
him, their eyes pasted wide open.
 |
|
Brave
(on the outside anyway) superheroes Zachary
Griffin, left, and Jeremy Susenbach are ready
for the dance. |
|
Inside, the scene is fantastic: mechanical skeletons,
screaming zombies, severed limbs, giant cobwebs, rubber rats and a loud
bouncy Halloween music track run by volunteer deejays Robert and April
Elwood, who cut short their vacation in order to be at the dance.
Scary But Fun
Quickly, Spiderman and the Hulk get over their fear,
release their stranglehold on Chip’s legs and start grooving to
the beat. Michael “Fast Freddy” Schleenbaker, 14, of Clark
Hill, S.C. (who has SMA and cerebral palsy), wears a grin so wide it
threatens to swallow his face. He stamps his feet and rocks in his chair,
dancing with Nikki Nirenberg, 21, of Columbia (Charcot-Marie-Tooth disease).
Josh Bush, 15, of North Ellenton, S.C., who has an unspecified
muscle disease, is decked out in white, with a cape, a Three Stooges
tie and an eight-ball walking stick. He tosses plastic butterflies to
girls to invite them to dance.
Morgan, the Bride of Frankenstein, begins a dance called
the Train and power chairs circle the floor, punctuated by “woo-woo”
cries. During the costume judging, Megan wins $50 for her power chair
version of Cousin Itt from the Addams Family. (The prizes, which this
year include a game cube and personal DVD players, are donated by a
camp volunteer.)
 |
| Camper
Eric Trofatter, left, and volunteer Thomas Beall
(aka Zombie) check out progress on the haunted
house exterior. |
Meanwhile over in the cafeteria, Kelli, in a ghost
costume, sits quietly playing cards with Ashlea.
The haunted house was a little too much for her,
but she’s feeling better now after a quick
call to Mom.
“Now don’t you think you’re not coming
back next year,” orders Ashlea.
“I know,” says Kelli, and smiles happily.
“I will.”
|
| |
|
|