Tuesday, June 7, 2016, is a day that 64-year-old Jason Monas, and Ruth, his wife of 39 years, will not soon forget.
It was about 1:45 a.m. in the morning when Jason awoke to use the washroom. He stepped out of bed and began to walk down the hall – except something was wrong – his legs felt wobbly and he couldn’t seem to stabilize without holding onto the walls for support.
Once he finally reached the washroom, he lost his balance and fell. Ruth called 9-1-1.
A rare diagnosis
Later that day, Jason was diagnosed with Guillain-Barré Syndrome (GBS), a rare neurological disorder in which the body’s immune system attacks the nerves, causing progressive paralysis starting from the feet and taking over the rest of the body.
Jason, a healthy gym-goer and active cyclist used to riding 60 km with his friends in the summer months, could feel the tingling sensations spreading throughout his body. Over the next few weeks following his diagnosis, despite medication and treatment, his condition and overall mobility drastically declined.
He couldn’t help but think of the impact of his condition on a family milestone event only a few short months away – his 28-year-old daughter Alanna would be getting married.
In mid-July, Jason was re-diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and like GBS, it’s caused by damage to the covering of the nerves, called myelin. Left untreated, 30 per cent of CIDP patients will progress to wheelchair dependence. Early recognition and proper treatment can avoid a significant amount of disability.
On July 25, Jason was admitted to Toronto Rehab’s Lyndhurst Centre, for extensive rehabilitation therapy
Special motivation on the road to recovery
When Jason arrived at Lyndhurst, he did not have any function or mobility in his arms or legs.
“Jason came to us fully dependent on all aspects of care and had a very severe case of CIDP,” recalls his family physician at Lyndhurst, Dr. Heather Zimcik.
“He’s also one of the most remarkable recoveries we’ve seen to-date – his willingness to come up with creative strategies to become more independent has enabled his speedy recovery.”
Throughout August and September, Jason worked extensively with an interdisciplinary team of professionals including nursing, physiotherapy and occupational therapy to strengthen his muscles, regain independence and increase his mobility.
But perhaps Jason’s biggest motivation was his daughter Alanna’s wedding.Alanna, who understands the challenges of people with disability as a physiotherapist at Holland Bloorview Kids Rehabilitation Hospital, set out to find a way for her dad to participate in a special wedding tradition – the father/daughter dance.
Three weeks before the wedding, Alanna and Jason booked wheelchair dance lessons through Wheel Dance, the only organization of its kind in Canada providing subsidized social/competitive Wheelchair Ballroom and Latin Dance classes recognized by Canada DanceSport and the World DanceSport Federation.
“Of all the milestones that Wheel Dance has reached over the past few years, the most rewarding part remains seeing the happiness and confidence that dance brings to wheelchair users and their friends and family, as well as the friendships that form between participants,” says Dr. Iris Kulbatski, Executive Director, Wheel Dance.
“There’s nothing more rewarding than celebrating the incremental achievements of participants, both physical and emotional, as they progress through our classes, and watching them shine when they’re performing in front of a group. Knowing that what we do is a celebration of inclusivity for participants and the community as a whole is rewarding beyond words.”
Alanna and Jason worked with Dance Instructor Katya Kuznetsova from Wheel Dance three weeks before the wedding and were able to squeeze in three rehearsals before the big day.
On Sept. 18, Alanna and her father surprised all of the wedding guests in the room with a beautifully choreographed dance to the band’s rendition of Eric Clapton’s “Wonderful Tonight.”
“It was the perfect song for a father/daughter dance,” says Jason. “It’s about how proud a father is of his daughter – and I’m so proud of Alanna. There wasn’t a dry eye in the room!”
Recovery beyond hospital walls
On Oct. 20, three months after he was first admitted to Lyndhurst, unable to move his upper or lower body, Jason was discharged and met his goal of walking out of the facility.
“It’s amazing how resilient the body truly is – how it recovers and gives back,” says Anne Hu, Jason’s Physiotherapist at Lyndhurst.
“We worked on a lot of strengthening and stretching. It was important that Jason re-learn to walk properly, without forming bad habits or dependency on a certain leg. We wanted to get him walking slowly and safely so that long-term he will have a smooth and strong step.”
Dr. Zimcik explains the importance of post-rehab beyond hospital walls.
“While Jason will continue to come back for outpatient rehabilitation, he can also start shifting his focus to opportunities to get back to his life as he recovers,” says Dr. Zimcik.
“That’s what makes people successful – getting back to the things that matter while their body continues to change and make gains.”
Today, Jason is back on his feet and walking with an assisted device. His goal is to eventually get back on his bike and take on the Heart and Stroke’s Ride for Heart next spring.
“I really can’t believe how fortunate I am,” says Jason. “I took my health for granted before and now I have a true appreciation for how fragile we all are. I have a totally different outlook.”