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Maggie's mission

Paralyzed mom dreams of playing with her kids again

Posted: Sunday, October 16, 2005

 

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  Maggie Winston is working now to recover from the virus that left her paralyzed. Photo by M. Scott Moon

Maggie Winston is working now to recover from the virus that left her paralyzed.

Photo by M. Scott Moon

It all happened so fast.

Maggie Winston woke up at about 8 o'clock the morning of her twins' first birthday with a severe pain between her shoulder blades.

At first, she just thought she needed a visit to the chiropractor.

Having been in a car wreck a few years earlier, and having given birth to the twins a year ago, the 21-year-old Kenai woman had had chiropractic touch-ups before.

This time, though, she called her mom, Kathy Kenner, who believed it might be something more serious and decided to take her to Central Peninsula General Hospital.

"By the time I got there, I couldn't move my legs," Winston said.

Within four hours, she couldn't move anything below her arms.

Physicians at CPGH did a computed tomography (CT) scan and blood tests, and within two hours requested Winston be medevaced to Providence Alaska Medical Center in Anchorage for examination by a neurologist.

At Providence, doctors ordered a magnetic resonance imaging (MRI) scan and lumbar puncture, testing Winston for Gillian Barre Syndrome — a bacterial infection-caused paralysis — or for multiple sclerosis.

It wasn't either.

 

Maggie Winston plays with her twin sons Daemon (in black) and Dylan (in red) as her mother Kathy Kenner watches last week. Winston was paralyzed from the neck down following a an attack from a virus. Now she's fighting back to gain full use of her body again.

Photo by M. Scott Moon

Finally Providence doctors diagnosed the young mother's condition as transverse myelitis — a swelling across the spinal cord caused by an unknown virus.

After one week in the intensive care unit, one week in the neurological unit and a week in rehabilitation, she started getting better.

"But I woke up one morning, and could no longer move my arms, and I was having trouble breathing," she said.

She was put on a ventilator for a couple of days and doctors determined the lesion had spread up into Winston's brain stem.

The lesion had started near the C4, C5 region of the spine, but started growing again.

She was now paralyzed from the neck down.

Doctors intubated Winston, putting a tube down her throat so she could breathe on her own, and did another MRI.

A decision was made to transport her by Lear jet to Harborview Medical Center in Seattle.

She woke up a week later, not knowing where she was. She had been sedated.

Before being weaned off the sedatives, Winston said she hallucinated for a couple weeks before being fully aware of where she was and what was going on.

 

Maggie Winston, right, talks with her friend Morgen Bennett and her daughter Gwendylan. Winston and her mother Kathy Kenner are thankful for all the help they've received from friends and others in the community.

Photo by M. Scott Moon

Doctors at Harborview confirmed the transverse myelitis diagnosis and put her on intravenous steroids — the only treatment for a spinal cord lesion — to reduce the swelling.

Winston was examined by pulmonary doctors and neurologists at Harborview, and was tested for about 100 viruses, but the bug causing the problem eluded detection.

Though the virus could not be identified, Winston's body had created antibodies to combat the invader, and infectious disease doctors decided on a treatment to purge her blood of the antibodies, which were now attacking her own body's tissues.

Winston's mother, who spent nine years working as a unit secretary and administrative assistant in in-patient nursing at CPGH, and is well versed in medical terminology, said her daughter was put through plasmapheresis, a process that spins plasma out of a person's blood in a centrifuge and replaces it with other fluids.

Plasmapheresis involves removing the fluid part of the blood (plasma) from the blood cells in a cell separator.

The cells are then returned to the person undergoing treatment, and the plasma containing the antibodies is discarded.

After seven such treatments, the infectious disease doctors were confident they had filtered out the antibodies, Kenner said.

Winston was still paralyzed from the neck down, so she did not feel any pain during the plasma exchange treatments.

"I was just really tired," she said.

"It looked like a (science fiction) movie.

"There were lots of bottles of liquid hanging from the I.V. pole," she said.

Still on a ventilator, Winston was now ready for rehabilitation therapy, but there was none availabile at Harborview.

On July 14, almost two months after she first felt the pain in her back, Winston was transferred to the University of Washington Medical Center, also in Seattle, for six weeks of rehab.

Daily treatments involved 1 1/2 hours of physical therapy followed by 1 1/2 hours of occupational therapy.

Though the progress is slow, Winston has gained some ability to move her arms.

With great concentration, she can now bend her right arm and her left arm slightly.

"They say I have a 30 percent chance of some recovery, 30 percent chance of no recovery and 30 percent chance of full recovery.

"Most of the recovery comes in the first six months," she said in September.

Never interested in sports or hunting and fishing, Winston said she just liked being a mom above all else.

"I liked everything about it ... feeding them, bathing them. I even liked changing their diapers," she said.

One weekend, while at the University of Washington, Winston was surprised by a visit from her two babies, Dylan and Daemon Duniphin.

Though she never married their father, Scott Duniphin, the couple was together for 4 1/2 years, until recently.

Winston was a stay-at-home mom the first six months after the babies were born, and then went to work as a hairdresser.

For four months, she worked at Affinity Salon, and then moved over to Signatures in Soldotna, where she was for about two months before becoming ill.

While in the hospital in Seattle, Winston also received a surprise visit from her brothers, Lars, 25, and Huey, 20.

The biggest surprise of all, however, was one day after being at the University of Washington for six weeks.

"They came in and said, 'Let's set a date,'" she said of one doctor visit.

It was determined she could go home to Kenai on Aug. 25.

"When they came and told me I could go home, it was amazing," she said.

Kenner said her daughter received "tons of cards and pictures of her babies" while she was hospitalized in Washington, and the friendships of the well wishers manifested into a crowd of about 50 people who met her plane at the Kenai Municipal Airport at 7:45 p.m. Aug. 25.

Others, including hairdressers from A Star Reflection Salon in Kenai, have conducted fund-raisers in Winston's name. Owner Starla Ferguson, Pattie Town and Lana Strouse donated all the proceeds from one day, dubbed "Maggie Winston Day," to help Winston.

They also assembled prize balloons with gifts donated by other businesses and sold the helium-filled balloons to raise additional funds for Winston.

Funds raised helped pay for Kenner's stay in Seattle, where she remained at her daughter's side for the 2 1/2 months she stayed there, and helped pay for the babies' visit.

"We have received tremendous support from the family and from the community," Kenner said.

Home now in Kenai, Winston, who turns 22 in November, undergoes physical and occupational therapy five days a week and exercises her arms to gain strength.

"They help me exercise all my muscles so they won't atrophy," Winston said of the therapists who come to her mother's home.

The illness has not impacted her diet. She says she can eat anything she wants, and her favorites include Mexican food and sweets.

Friends call and visit often and, along with family members, including her grandparents and brothers, take her outside daily. Though she's wheelchair-bound, she said she enjoys getting out.

Winston said she is "a really spiritual person," and has a great faith in God, praying daily.

When praying, she said she thanks God for the many blessings she has, and asks for healing.

Her babies are still too young to truly understand what is going on with their mom, and Winston said they love to crawl up on her wheelchair and give her hugs and kisses.

When asked what she would do first if she found one day she could get up and walk again, without hesitation she said, "I would pick up my kids and hug them and squeeze them.

"I'd love to be able to chase them around."



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