Fran Cosper’s long-distance recovery from Guillain Barré Syndrome
Long-distance cyclist Fran Cosper and his friends often biked 120 kms on a Saturday. But that changed a year ago when he woke in the night and couldn’t feel his legs. Doctors at The Ottawa Hospital diagnosed him with Guillain Barré Syndrome.
Fran struggled out of bed the next morning and tried to do stretching exercises.
“I thought I had a pinched nerve,” he said. “I went to get on my hands and knees, and fell face first on the carpet. I thought, ‘Well, I can’t move. This is much more serious.’ My wife, Elise, came down and saw I had facial paralysis, and thought I’d had a stroke.”
Fran knew it wasn’t a stroke because both sides of his body were paralyzed. (Stroke affects only one side.) Doctors at The Ottawa Hospital diagnosed him with Guillain Barré Syndrome (GBS) in February 2017. This rare autoimmune disorder causes the immune system to attack the nerves, damaging the myelin sheath, which is the nerves’ protective covering. As a result, the brain can’t transmit signals to the nerves in the muscles, causing weakness, numbness or, as in Fran’s case, paralysis.
One millimetre at a time
About one in 100,000 Canadians contracts GBS every year. Patients do recover but it can take more than a year because the nerves re-grow slowly, one millimetre per month.
GBS can be brought on by an infection or virus. 56-year-old Fran had had two colds back-to-back, including a high fever, which may have thrown his immune system into overdrive. Within days, his balance was off and he had difficulty lifting pots to cook dinner. Hours later, the disease was full blown, attacking his nervous system. Within 24 hours, Fran couldn’t move.
“We see patients with Guillain Barré Syndrome at The Ottawa Hospital Rehabilitation Centre probably five or six times a year,” said Dr. Vidya Sreenivasan, doctor of physical medicine and rehabilitation. Some have mild cases, but others, like Fran’s, are more serious.
For Fran, the disease continued its nerve damage following his admission to the hospital. After two weeks, he was transferred to the Rehab Centre, where his care team included doctors, psychologists, social workers, recreation therapists, physiotherapists, respirologists, occupational therapists and nurses.
“He arrived for physiotherapy in an electric wheelchair that he controlled by moving his head, because motor skills in his arms and fingers were completely absent,” said assistant physiotherapist Andrew Atkinson. “There was a shorter list of the things he could move. From a chair position, he could extend his left leg and hold it against gravity. His right leg he could kick, but could not hold it. He basically presented like a quadriplegic.”
Fran was completely dependent for care. He needed to be washed, dressed, and turned in bed. He couldn’t even close his eyes. The nurses had to tape his eyelids shut so he could sleep.
“It must be like being buried alive.” – Physiotherapist Andrew Atkinson
The worst part, Fran explained, was the excruciating pain in every part of his body.
“Fran is still in a lot of severe pain because his nerves have been damaged,” said Dr. Sreenivasan. “He suffers a neuropathic pain that can feel anywhere from numb, burning, electric shock, or deep toothache. Pain management was very important.”
An infectious attitude
Fran had physiotherapy five hours a day, including three times a week in the Rehab Centre Pool. Within two months, he could stand and take steps with help. He learned to walk again: at first with a harness, then using the parallel bars. His arms were slower to recover and the fine motor skills in his fingers will take longer. Fran plays jazz on the saxophone, so is motivated to get his fingers working again.
“There’s something about visually seeing yourself walk and move in a weightless environment – it’s a mind-body connection. That’s when the mind realizes ‘it’s possible.’ If you can visualize it, think it, speak it, it’ll happen.”
Within two months, Fran could stand and take steps with help. He learned to walk again: at first with a harness, then using the parallel bars. His arms were slower to recover and the fine motor skills in his fingers will take longer. Fran plays jazz on the saxophone, so is motivated to get his fingers working again.
“It’s not a foregone conclusion that I’ll ever play again,” Fran said. “That’s the reality. But you have to have those moments of darkness. Embrace them and move on – that’s what you gotta do.”
Fran’s positive attitude was infectious.
“You have to have those moments of darkness. Embrace them and move on – that’s what you gotta do.” – Fran Cosper
“What stood out about him was that he would encourage other patients as well,” said Dr. Sreenivasan. “Everybody has dark days. They wake up and think ‘I can’t do it. I just can’t see the light at the end of the tunnel.’ Fran was able to provide that light at the end of the tunnel and help others, which is pretty extraordinary considering what he was going through himself.”
The nurses helped Fran with day-to-day care, teaching him how to wash and dress himself and be independent again.
“I can honestly say that the kindness and level of care I’ve got really humbled me. The nurses and staff have just been marvelous,” said Fran. “I’ve basically been swiped off the planet for a year. But the only negative thing about being in the hospital is the disease itself.”
Fran was discharged just before Thanksgiving in 2017 and left the Rehab Centre using a walker. When he returned the next month for a follow-up physiotherapy appointment, he walked in unaided.
A year-and-a-half later, Fran returned to the hospital, this time as a volunteer.
“I think volunteering is a very tangible, and meaningful way to give back,” said Fran. “You don’t know how you might affect someone. People have their struggles, and a little conversation, a little ‘you’re important’, a little ‘you’re okay’ could make a difference in their life.”