‘I can’t imagine what my quality of life would be like today without MacWheelers’

“Spencer Edwards took his family to the gym for an early Christmas present in December of 2019. He’d been a member of the Physical Activity Centre of Excellence (PACE) at McMaster for nearly two years. Edwards was a regular, working out four days a week. He was proud to introduce his wife and teenage son and daughter to everyone he’d befriended – there were a whole lot of introductions, handshakes and hugs. Edwards then took his family over to the parallel bars. He hoisted himself out of his wheelchair and, without fanfare, did what no one was expecting, Edwards included. He walked from one end of the bars to the other and then back again – 12 slow yet steady steps – without once reaching for the wooden rails. Everyone burst into tears, including Edwards. “I’m a teddy bear stuffed with marshmallow.” Feeling joy and happiness and seeing it in others have always turned on his waterworks. The Edwards family had good reason to be joyful and happy – that short surprise walk in the PACE gym had been a long time coming. In January 2017, Edwards woke up with a sharp, intense pain in his lower back. “I thought I’d pulled a muscle or pinched a nerve, just the usual stupid middle-age stuff.” Pretending the pain wasn’t there and soldiering on wasn’t an option – his wife Jody is a nurse. They tried everything – ice and heat, chiropractic, physiotherapy and muscle relaxants and meds – but the pain persisted. He went for an MRI and the scan revealed nothing. Edwards was losing his independence as he lost sensation in his legs. “It felt like I was wearing Lululemon pants that were three sizes too small.” He started using walking poles to get around and then switched to a walker. He became less active and more housebound. He remained a medical mystery until he wound up laid out on the living room floor in February of 2017. His legs had suddenly given out. Luckily, his kids were home – they first called 911 and then their mom who was working a Saturday shift at the hospital. The paramedics thought Edwards was having back spasms, something that could be treated at home without having to spend a long day in a crowded ER. “My wife stayed on the line the entire time and told me to get my butt into the ambulance, expletives deleted.” More tests were run and that’s when doctors discovered the bacterial infection that had settled in his spinal cord and was eating away at the discs in his back. Bacterial spinal infections are rare and serious, causing severe back pain, weakness, numbness, fever and potential paralysis. How he got the infection would remain a mystery. Edwards was pumped full of antibiotics and booked for emergency surgery to clear out the infection and clean up the damage. The initial prognosis was good. Edwards thought he’d be walking out of the hospital in a couple of days and his life would finally return to normal. He stayed at the Hamilton General for three months and then spent another year in the hospital’s outpatient clinic. Recovery was slow. Relearning how to walk was physically and mentally exhausting. He says he couldn’t made it through without his wife and kids. Once home, he briefly tried a motorized wheelchair before switching to a manual one to avoid running over the family pets and destroying the baseboards and drywall in his Waterdown home. “It was like trying to drive a Bobcat loader indoors.” With his time drawing to a close at the outpatient clinic, staff recommended the MacWheelers program at PACE. “Jody and I got the grand tour.” Edwards loved what he saw and signed up on the spot. Membership would have life-changing privileges. “Without PACE, I would’ve been cut loose from the outpatient clinic with nowhere else to go. I can’t imagine what my quality of life would be like today without MacWheelers. For the price of regular gym membership, there are kinesiologists, physiotherapists and a team of students guiding you every step of the way. That’s an incredible service you can’t get anywhere else or afford with anything less than killer insurance coverage.” MacWheelers is one of three programs that grew out of research studies conducted by kinesiology professor Audrey Hicks nearly three decades ago. Those studies conclusively showed that exercise could measurably improve the health and wellbeing of seniors, adults living with spinal cord injuries and adults with Multiple Sclerosis (MS). The results from Hicks’ groundbreaking research led to the development of evidence-based guidelines for physical activity that have been adopted around the world, including at PACE with the MacWheelers, MacMS-FITT and MacSeniors programs. PACE solved a problem that had weighed heavily on Hicks as a researcher. Her studies included control groups who didn’t get to participate in the supervised exercise programs. She believed in putting research into practice so it could have a real and immediate impact for as many people as possible. With PACE, Hicks could make and keep a promise to control groups who could sign up for the exercise programs once the studies ended. Pretty much everyone took Hicks up on the offer. Today, PACE runs six specialized, not-for-profit research-based programs for more than 500 community members. The centre is a hub for research, community engagement and hands-on experiential learning for around 200 undergraduate students who volunteer every year and work alongside experienced health professionals. PACE is open Mondays to Thursdays, with Fridays reserved for research studies that often involve community members. Edwards is one of 53 members enrolled in MacWheelers. The program requires a lot of staff and specialized equipment, making it the most expensive program to run at PACE. With the goal of keeping membership fees as accessible as possible for community members, operational costs are partially offset by PACE’s fundraising efforts including an annual gala and donations from community partners. The Rick Hansen Foundation has helped purchase equipment as the MacWheelers program was starting up. “The cost of running MacWheelers is high but the benefits are far greater for community members and their families, our students and researchers,” says PACE director and kinesiology professor Jennifer Heisz . “There’s nothing else like it in the region so there are many people counting on us to keep the program going.” It’s been eight years since Edwards joined MacWheelers and he faithfully exercises twice a week. The full-body workouts and laps around the gym are gruelling but he says he feels far worse if he doesn’t exercise. Without regular workouts, the pain returns along with the risk of return visits to the ER to get the pain under control. “If sitting is the new smoking, I’m a pack-a-day sitter. PACE keeps me active and healthy.” When Edwards joined PACE, he wore leg braces and used a walker when he wasn’t in his wheelchair. It took him 30 minutes to walk 20 metres and then he was totally spent and done for the day. Eight months later, he was averaging a kilometre a workout, doing17 laps around the gym. A year after joining PACE, the leg braces were off and he traded his walker for a set of poles. The entourage of staff and students who once surrounded him like presidential bodyguards while he did laps was down to a single walking companion. There’s also been a boost to his mental health and well-being. From the day the doors first opened, PACE has proven to be a cure-all for social isolation and loneliness for community members. Edwards is very much a people person – he spent more than 20 years doing youth engagement work – yet his job with the Presbyterian Church in Canada is now mostly remote. “PACE is where I recharge my extroversion batteries.” And it’s where he once again gets to be a mentor for the student volunteers. When asked who’s helped him the most at PACE, Edwards refuses to answer. “There have been too many people to name and thank.” But that doesn’t stop him from then rhyming off more than a dozen students and staff. He calls them rock stars, superstars, kindred spirits and good folk who encouraged and cajoled him to get back on his feet. Edwards says they helped him regain his independence and made PACE feel like his second home. Through the fall, winter and spring, his workout companion has been Petra Abi-Ghanem, a third-year Honours Biology and Psychology, Neuroscience & Behavior student. She heard about PACE from friends and applied to volunteer. She’s wrapping up her first year as a volunteer and plans to continue during for her final year of undergrad. Abi-Ghanem likes working with people and is aiming for a career in physiotherapy or neuro rehabilitation. During the fall term, she commuted three hours to get to Mac, even on days when volunteering at PACE was the only commitment on her calendar. She’s since found a place to rent in Hamilton to shorten her commute to classes, PACE and St. Joseph’s Hospital where she also volunteers. “Spence is my easiest client. He’s amazing with lots of stories to share and good advice to give.” Spencer Edwards has spent the fall and winter term working out with third-year biology and psychology, neuroscience & behavior student Petra Abi-Ghanem. Petra is one of more than 200 undergrads who volunteer at PACE. There’s a whole lot of laughter and catching up during a workout that started with stretching and ended with laps around the gym. “She’s a superstar,” Edwards says when asked about Abi-Ghanem. He does his best to keep the waterworks in check. “Petra’s destined to do brilliant things. She’s going to do whatever she puts her mind to.” Much like what Edwards has done for the last eight years at PACE. The post ‘I can’t imagine what my quality of life would be like today without MacWheelers’ appeared first on McMaster News .

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