Marcie Gibson: Living with A.L.S. for 10 years
Marcie Gibson had been a competitive gymnast since she was 9 years old and a cheerleader in junior high, high school, and college. Now she wanted to fulfill her dream to become a Dallas Cowboy Cheerleader. In January 1994, just two months before tryouts, Marcie was diagnosed with A.L.S., at the age of 23.
Today, ten years later, Marcie still lives at home in Texas in the room she grew up in – living with her parents who take care of her. She is looking forward to the day she will be well. To be able to walk again, to care for herself – to do as she wants to do without always having someone doing for her. She wants her independence back and to be free from A.L.S.
LIVING with A.L.S. for 10 years – Marcie is now 33 years old
March 25, 2004
By Linda Gibson
Arlington, TX
Mom of Marcie – Living with A.L.S.
Marcie prayed for a warm winter this year (2004) and she got it. It never really got cold in Texas. It did snow 2 or 3 inches one Saturday morning this year but by midafternoon the snow was gone.
Ten years ago this May, Marcie graduated from college in 1994 after receiving a diagnosis of A.L.S. in January of 1994 when she was only 23 years old.
She still lives at home in the room she grew up in – living with her parents – we take care of her. She sees her sister and brother once a week as well as her brother-in-law and her 2 nephews age 4 and 8 years old. Every Saturday night is our "pizza" night so my whole family is always together.
She is looking forward to the day she will be well – free of A.L.S. To be able to walk again, to care for herself – to do as she wants to do without always having someone doing for her. She wants her independence back and to be free from A.L.S.
To our knowledge – Marcie is the youngest female ever DX with limb-on-set ALS in Texas. Another young lady, one month older than Marcie and DX 2 months before Marcie, has Bulbar A.L.S. Both young ladies have the same outlook on life – one day with God’s help they will be free of A.L.S.
Marcie got her degree in Exercise and Sports Study – she lost the use of her arms and then her legs. The other young lady from South Texas got her degree in Speech Pathology (I believe, something to do with speaking): she lost the ability to speak first.
Both graduated in May of 1994 after being DX with A.L.S. at such a very young age. I have known of young men DX in Texas this young and younger but not young ladies except for these two.
We have ordered her a power chair and she is learning to use a bipap. She has an I.P.P.B. machine she uses 3 or 4 times a day to help to inflate her lungs. She can still speak but she only eats what she can drink.
For the past 4 _ years I have been making her fresh carrot juice (about 40 oz.) every day and fresh fruit juice (about 16 oz. a day) each day also. For someone who only drinks juice and what food she can eat with a straw she is doing fairly well after 10 years with A.L.S.
I am with her nearly all the time now. I retired after 25 years of teaching. For the last 5 years I was teaching I had a team of 45 ladies from my church, parents of children I had had in my class and friends of Marcie who would come over daily to stay with her so I could continue to teach 4 hours a day. Now her friends come over twice a week for an hour or so to visit and during that time I may run an errand if I need to.
I just wanted to give you a short up date on Marcie. She had her 33rd birthday last November. We know God is using Marcie and us to show our faith in God – HE is in control of all our lives. We do not question "why" we just know this is all in HIS plan for us.
Marcie Gibson - A cheerful approach
Dave Ivey Star-Telegram Writer 08/10/97 The Fort Worth Star-Telegram (Copyright 1997)
Cradling an 18-month-old nephew in her arms. Flipping through a rack of dresses at the mall. Swatting a mosquito off her leg at a backyard barbecue. Opening doors and channel surfing. Zipping zippers and buttoning buttons.
Everyday actions like these and countless more that the rest of the planet takes for granted have slipped beyond Marcie Gibson's abilities.
"I just want to be able to scratch my nose when it itches," said Gibson, one of America's youngest victims of Lou Gehrig's disease.
At 26, the former Sam Houston High and UT-Arlington cheerleader is in her third year since being diagnosed with an insidious illness that attacks muscles and kills 50 percent of its sufferers within three years. There is no cure.
But there is hope.
It exists inside this courageous young woman's heart.
And for whatever reason, perhaps it's her athletic background or maybe her unflinchingly positive outlook, her physician says the disease is progressingrelatively slowly. Gibson adamantly believes she can beat it, and she appears so healthy, vibrant and beautiful that you want to believe her. You begin to believe her. The alternative is just too painful.
Goosebumps break out as she describes her simple, yet remote dreams.
"I really believe that I won't have this disease forever. I feel that I'm going to leave this house," Gibson said, "that I'll have my own house and I will be able to do everything I need to be on my own.
This will all just be a journey I had to go through to get wherever I'm going."
"Don't worry. We have ruled out all the biggies."
After graduating from Sam Houston in 1989, where she was a sophomore class president and an A student, Gibson attended Abilene Christian University.
"At that time, I figured I would own my own gym someday and I would teach gymnastics or cheerleading," she said. "Maybe I'd go into corporate fitness or physical therapy, or become a personal trainer."
She cheered at ACU, but became homesick and after two years returned home to her parents, Harold Jr. and Linda, in southeast Arlington. She transferred to UTA and became involved with the Dance Ensemble while pursuing a degree in exercise sports studies.
In her senior year, Gibson's goal was to be a Cowboys cheerleader.
Tryouts were in April 1994. In 1991, with no dance experience, she survived four cuts and made it to the finals.
"I minored in dance, and I thought I could make their team, stay on for a couple of years and then handle the choreography," she said.
"That's what I really wanted to do. Those were my plans."
Gibson became a Mavericks cheerleader in 1992 and it was at a cheerleading camp in July 1993 that she began to realize something was wrong.
"My tumbling was suffering badly," she said. "I couldn't even do a back handspring, and to a former gymnast, that's like a cartwheel - you don't even think about it. Jumps were really getting hard. I think I only cheered at one volleyball game my last year, and that was it."
She thought it was a minor chemical imbalance and made an appointment with her family physician. The diagnosis: an eating disorder.
"I've always been thin, of course not as thin as I am now. She knew I was a cheerleader and supposedly we're all concerned about weight," she said.
Gibson's mother slowly shakes her head when she recalls that day.
"The doctor just kept telling us, 'Don't worry. We have ruled out all the biggies. It's nothing major,' " Mrs. Gibson said. "So we didn't."
The Gibsons next made an appointment with a neurologist. The diagnosis was myasthenia gravis, a nervous disorder that weakens muscles, especially in the face and neck.
"For the second time, we were told, 'Don't worry.' We still did not think it was something major," Mrs. Gibson said. "We thought it was fixable."
But Gibson didn't like what the medications were doing to her body, so she started looking for alternative treatments. She attended a Muscular Dystrophy Association seminar, where she met Dr. Richard Barohn, co-director of the A.L.S. clinic at the University of Texas Southwestern Medical Center in Dallas. They scheduled an appointment for after the holidays because, after all, there was
nothing to worry about.
Three visits later, after a battery of tests that included a spinal tap, a muscle biopsy, endless needle pricks ("If I'd have had a drink of water, I'd have probably leaked all over because there were so many holes in me") and a series of 11 electrical shocks, she was diagnosed with ALS, or amyotrophic lateral sclerosis.
"That was one of the hardest things I have ever had to do," said Barohn, noting that most victims are diagnosed between the ages of 40 and 70, not 23.
The family's immediate reaction was utter disbelief.
"She'd never been sick. She was an athletic child. She was always running and jumping and tumbling," Mrs. Gibson said. "And now you tell me she has a disease with no cure? No treatment? We were stunned."
Gibson experiences bouts of fatigue, but feels no pain. She takes loads of vitamins as well as Rilutek and Neurontin, two drugs Barohn said seem to slow the disease's course. She has volunteered for two clinical trials at his clinic, but chooses not to attend a support group.
Water aerobics and physical therapy keep her as fit as possible.
"My body is healthy. My muscles are just sick," Gibson said. "I feel if I can keep my body as healthy as possible, I'm going to be around a whole lot longer. So hopefully, if they find a cure in the next few years, I'm going to be healthy enough where I can regain my muscles."
"You can't have Texas-big hair forever."
Gibson graduated from U.T.A. in May 1994, but because she was diagnosed while still in college, she never secured a full-time job with benefits. She has no health insurance and, like many A.L.S. patients, relies on the Muscular Dystrophy Association for help with medical expenses.
To show her appreciation to the M.D.A., Gibson has agreed to tell her tale on Channel 5 during Labor Day coverage of the Jerry Lewis telethon.
It won't be her first testimonial.
Gibson is one of three people featured in the A.L.S. Association's 1997 fund-raising campaign. She has also appeared in a video for Rhone Poulenc-Rorer, a Pennsylvania pharmaceutical company that makes Rilutek.
From these humble beginnings may spring a career in modeling.
"I just need to find an agent who will work with my limitations. It's not easy," she said. "I've been told that I'm not disabled enough. I don't have any props (wheelchair, braces, etc.). It's not like I want to be a supermodel or anything. I just want to do something."
She wants to be active.
Gibson can still drive, though in a modified vehicle equipped with "zero-effort steering." She has to press the garage door opener with her chin, and she had to abandon her hobbies of sewing and flower arranging. She can't even wash her own hair anymore.
"I cut it real short because it is easier to deal with," she said.
"You can't have Texas-big hair forever."
She smiles. She laughs. She lives .
One thing this former cheerleader hasn't lost is her spirit or her ability to inspire others. Only now, however, it is time to root for her.
MGM
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