The battle against Guillain–Barré syndrome

What began as an annoying foot tingle morphed into a medical nightmare for Roy Kelsey. On Wednesday, Sept. 5, 2012, Roy noticed his feet were numb and “going to sleep.” The 48-year-old worked Labor Day weekend cutting trees near his home in St. Joseph, Mo., and thought he’d pinched a nerve. A visit to his chiropractor didn’t provide any relief. By Thursday, the tingling sensation spread to Roy’s hands and the pain sent him to the emergency room at Heartland Regional Medical Center in St. Joseph, Mo. Doctors believed he was suffering from nerve damage caused by the physical labor and sent him home.

On Friday, Roy’s health was rapidly declining and by the time his doctor scheduled more tests at the hospital, he couldn’t stand. A spinal tap confirmed Roy had contracted Guillain-Barré syndrome (GBS). “I’d never heard of it before,” said Roy. His fiancé, Lana Robinson, and his family, researched the uncommon disorder in which the body’s immune system attacks its own nerves. “That’s when I learned I was a rare statistic,” said Roy. GBS is uncommon, affecting only 1 or 2 people per 100,000.1  Weakness and tingling in the extremities are usually the first symptoms. These sensations can spread swiftly and eventually paralyze the body – that was Roy’s outcome.

During his month-long hospitalization, Roy quit breathing twice and had to be intubated. “It was terrifying for Lana and my family,” said Roy. “I’m so grateful to be alive!”

When Roy was admitted to Madonna’s Long Term Acute Care Hospital (LTACH) on Oct. 8, he was tethered to a ventilator, trach and feeding tube. Roy communicated through grunting and slight head movements as nurses transferred him in and out of bed with a Vanderlift, a battery-operated lift system. A gregarious and active guy, Roy felt trapped in a bad dream.

Roy used the Lokmat to rebuild his leg strength and coordination after GBS left him paralyzed.

Roy used the Lokmat to rebuild his leg strength and coordination after GBS left him paralyzed.

“Seeing Roy when he first got here, I thought to myself, wow, this is probably as bad as it gets,” said Darin Forman, a registered nurse on LTACH, who himself is a GBS survivor. Despite his weakened state, Roy was dedicated to his daily therapy. The nursing and respiratory teams gradually weaned Roy off the ventilator and feeding tube – celebrating when he could breathe and eat independently. With each step, Roy moved closer to his main goal – to walk again.

Within four weeks, Roy’s arms and legs felt normal again. He transferred to Madonna’s Acute level and through a specially designed care program, his therapy intensified. “I kept telling everyone I am going to walk out of here,” said Roy. Using technology like the Moveo™, Proprio 4000™ and Lokomat®, restored Roy’s leg strength and coordination. In aqua therapy, his stamina and balance increased using the water’s resistance and ankle weights.

As an estimator and project manager, Roy relies heavily on his hands. In occupational therapy, tasks like folding clothes and frying an egg revived his dexterity. Recreational outings to play shuffleboard and air hockey provided social and physical outlets.

Cheerleaders through Roy’s recovery fueled his positivity. Darin, sharing his own fight with GBS, proved invaluable insight. “Darin was awesome and let me know what to expect,” said Roy. His family and Lana offered constant encouragement. Roy’s employer, Brooner Construction and Crane, is holding his job. Company executives visited Roy, upgraded his cell phone and added free service. “They’ve been incredible,” said Roy.

On Dec. 22, Roy was ecstatic to rejoin his family in Missouri. He can walk 1,000 feet aided by a walker, and plans to transition to a cane. Roy says his battle with GBS made him appreciate his loved ones. “Life’s too short – I got a nice Christmas present to go home early.”

1Source: MayoClinic.com

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3 Comments

  1. Thankyou so much for helping Roy. I am Lanas mother and I was devestated when I saw Roy on the ventelator and in a coma state.
    I coudn’t believe the progress he was making at Madonna and am so glad Lana and Roys mother Shirley decided to send Roy to Madonna.
    He is home with us now and we had a most wonderful Christmas a family could ever have. When Lana brought Roy to my house the Saturday before Christmas I thought it was just for a visit, but he sitting at my table assured me that no, he was home. I just started sobbing and hugging on him. I was so happy we had him home with us. Thank You God!
    Sallie

    Reply
  2. Debbie

     /  February 17, 2013

    I know Roy personally and I remember when he first started having problems with this, I was back home visiting in MO the first week in September 2012, when he and Lana, (my best friend since middle school) came by my niece’s to say hello while I was in town, he was complaining then of a lot of pain, at the time he thought it was nothing more then just something simple or maybe he overworked his muscles the prior weekend. After I return back to California, Lana kept me updated on what he was going through, and it took some time for doctors to know exactly what he was suffering from. Her texts and emails seem to get worse as she updated me on his health, I could only offer my prayers to her and the family. It was then she was telling me he was going to go to a rehabilitation place. Toward the end of the year, close to Christmas, she said he was walking and going to be returning home, I was very happy for her and him, and their entire family.
    So there must be something special about this Madonna Rehabilitation Hospital, thank you for helping out my friends!

    Reply
  3. Wow! Tremendously enlightening write up. We are bookmarking the particular blog today. Kudos!

    Reply

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