Disease doesn’t paralyze couple

Local woman overcomes rare disease and publishes a book co-authored with husband

John and Suzan Jennings recently published a book that discusses their journey back from Guillain-Barré Syndrome.

John and Suzan Jennings recently published a book that discusses their journey back from Guillain-Barré Syndrome.

Suzan Jennings was working hard as a sales manager in Vancouver when she felt a tingle in her cheek, six days later she was sitting in the emergency room at St. Paul’s Hospital, numb from the neck down. Her husband John had to prop her up in a chair while he moved the car from the emergency entrance, and she remembers it vividly.

“I was like a little baby, I was losing the ability to hold my neck and hold up my body,” she said.

After signing in, the triage nurse and John attempted to help her back to the waiting area, but they only made it three steps before Suzan’s leg’s failed her, each going a different direction and leaving her in the splits on the ground.

“All we hear on the intercom system is ‘There’s an emergency in the emergency!,” she said, “and that was a definitive moment in my life.”

Suzan was diagnosed with Guillain-Barré  Syndrome (GBS), a rare disorder where the peripheral nerves become damaged, including motor nerves to muscles that enable movement, sensory nerves from the skin and joints, and nerves that regulate functions such as heart beat and blood pressure. Some people also lose their eye sight, hearing and voice. Suzan was told she most likely wouldn’t walk again, but almost five years later she is walking on her own and volunteering as a liaison with the GBS/CIDP Foundation of Canada, helping others overcome the disease.

Suzan and John now live in Parksville and published their book Paralyzed Without Warning: A Couple’s Journey Back from Guillain-Barré Syndrome in December last year.

Although a nurse at St. Paul’s told Suzan her husband would not be back, John did come back, resigned his job as a hotel manager and has stuck by her side as her caregiver throughout the ordeal. He said he still remembers the day he took on that role, when he helped her to their bathroom, and then she told him she couldn’t move her arms or hands.

“At that moment my bride became my patient,” he said.

“Our relationship changed forever,” she said.

Suzan went through ups and downs during her month and a half at St. Paul’s. After they determined what she had by doing a pain-staking spinal tap, they brought in treatment called IVIG. This is a product made by taking the donated blood or plasma from 1,000 or more healthy donors, mixing them together and separating out and purifying the critical antibodies.

Suzan needed five bags of this and John said he was told if there wasn’t medical coverage, the bags would cost about $15,000 each. After the treatment, Suzan’s right hand responded and her heart jumped, but the feeling faded and she was left paralyzed again.

Things went downhill for a period and at one point she was about to be moved down to the Intensive Care Unit, because she wasn’t getting enough oxygen. She asked if she could take her flowers and she was told no, so she refused to go. She went somewhere after that, she said, and made a deal with God. When she woke up she was full of fight.

“It was this absolute moment of clarity, and I knew we were going to end up being of service for the rest of our lives,” she said.

Three weeks after being transferred to GF Strong Rehabilitation Centre Suzan was ecstatic when she got feeling back in one of her fingers. John arrived and Suzan was sitting up in her wheelchair with her middle finger raised.

“Everyone who walked by, she’d say, ‘look, look,’ and everyone thought, ‘this lady’s giving me the finger,’” John said.

Suzan worked hard on her rehabilitation for two and a half months at the centre and continues to do so today. Although she still can’t feel her hands and doesn’t have feeling from the knees down, somehow she can walk and pick things up.

Suzan said the hardest part of her illness was losing all of herself and having to find herself again. It was little things, she said, like not being able to wipe her own tears when she cried. But she remained positive throughout her struggle, encouraging other patients to keep fighting and even having a psychologist tell her at one point she stopped by for some inspiration from Suzan.

The couple took pictures throughout Suzan’s fight and Suzan even took voice recordings. It has taken them three years to complete the book, which has 150 pictures. The couple nows does public speaking including to UBC’s second year medical students, where they have received heartfelt appreciation and standing ovations. The couple hopes to go on the road to continue public speaking and spreading hope and inspiration. Suzan said she feels lucky and wants to help others wherever she can.

“I believe what I got back is not what I was supposed to get back. It’s a gift and every morning I wake up and think what a gift this is.”

The book can be ordered at local bookstores, will be available to Chapter’s Nanaimo location, and can also be ordered form their website www.paralyzedwithoutwarning.com