Author: Jessica Geboers

CP-NET Community Profile: Megan Sherwin

Jessica GeboersLeave a comment
Headshot of Megan Sherwin.

It has been eight years since CP-NET last checked in with Megan Sherwin. At the time, she was in Grade 9, training and competing with the Flames integrated swim team at Verity Village in Toronto and dreamed of competing in the 2020 Olympics.

A lot has happened since then. Megan graduated high school in 2018 and went on to study Recreation and Sports Business at the University of Waterloo. In addition to her studies, she belongs to the university’s varsity swim team, the Waterloo Warriors. Megan volunteers at and is a member of the KidsAbility Youth Advisory Council (KAYAC) when not studying or swimming.​

Megan is one of two para swimmers on the Waterloo Warriors roster––herself and a member of the men’s team. She explains, “a university is allowed to have 18 able-bodied athletes and one para-athlete per gender.” Due to a stroke before birth, Megan has left-side hemiplegic Cerebral Palsy. “It’s great to be able to compete on a university level and have a team that supports para-swimmers and just be like everyone else.”

In early March, the team competed in the University Provincial Championships. Megan achieved the best time in her 200-meter race. “It’s nice to know I can still get best times at my old age,” she says with a laugh. “It was a nice surprise.”

She and the team train twice a day, six days a week, beginning at 6:00 am and including pool and dry sessions. Juggling swimming and school have taught Megan many valuable life skills, including the importance of time management, teamwork, and balance. As a result, she often plans and completes her assignments early––sometimes weeks in advance––especially if it’s due the Monday after a weekend swim meet. But she wouldn’t have it any other way. “Swimming has helped my school, and school has helped my swimming,” says Megan. “I don’t know what I would do without either of them.”

While she competes against both para- and non-disabled athletes, as a para-swimmer, Megan does have “a code expectations” that are unique to her abilities. For example, she explains, instead of swimming two laps with the butterfly stroke, I have the option to swim one with the butterfly. Otherwise, the meet and race results are documented the same way for all competitors.

Megan is travelling to Berlin, Germany, at the end of March for a reclassification meet. Para-swimmers must compete in reclassification meets every few years to evaluate their current abilities and ensure they are competing at the current level with the appropriate exemptions. In addition to the meet, she is excited to visit and explore Berlin for the first time.

Now 21 years old, Megan is currently in the fourth of her five-year program. The alternating school and co-op terms over a three-semester year enable her to earn a degree, valuable work experience, and try many different roles within the recreation and sports business industry­­––discovering what she likes or doesn’t like––before graduating in 2023. During this Winter semester, Megan has been working remotely as a video analyst for TritonWear, a company that specializes in wearable technology that helps swimmers track and improve their performance.

Like most students, COVID restrictions mean that Megan has spent the last couple of years studying and working from the apartment she shares with two friends, just a short walk from campus. Things began to feel a bit more normal when swimming started again, but she is excited to get back to in-person classes this Spring semester.

Megan advises youth to be open to opportunities and try everything until they find their passion. She played hockey, soccer, and ran cross country before discovering her love for swimming. With swimming came opportunities to compete and travel both in Canada and internationally, meet new people, create lasting friendships, and push herself to learn new and transferable skills. And she approaches opportunities that arise within school the same way.

“Don’t put yourself in a box because you have a disability. There are so many opportunities from it that you may not expect. Eventually, you’ll find something that works for you.”

This article was originally written and published as a part of CP-NET’s Community Profiles.

CP-NET Community Profile: Amanda St. Dennis

Jessica GeboersLeave a comment
Amanda St. Dennis

Last spring, Bloom posted on Facebook about an upcoming CP-NET webinar on mental health in adolescents and young adults. Happy to see such an important topic being discussed and investigated, Amanda St. Dennis commented on the Facebook post to reiterate how important conversations around mental health are for young people. She wished more research had been done when she was younger and struggling with her mental health. 

Thinking that Amanda may have some useful insights, Bloom’s editor put her in contact with CP-NET. Not long after becoming a participant in the MyStory project, Amanda became a member of the CP-NET Stakeholder Advisory Committee and the Transition Hub. More recently, she became a co-investigator on the Youth Engagement in Research project. While she had not expected all of this to come from one comment on that Bloom Facebook post, Amanda is thrilled to be engaged in research, using her education, background, and experience to help others, particularly during the pandemic.

In June, Amanda graduated from Carleton University with a Bachelor of Arts Honours degree in Child Studies with a minor in Disability Studies. She also has over ten years of experience working with youth with disabilities as a personal support worker and camp counsellor at Easter Seal Ontario’s Merrywood Camp.

This is all in addition to being a woman with disabilities, including mild to moderate Spastic Right-side Hemiplegic CP, Non-verbal Learning Disorder, ADHD-combined type, and General Anxiety. As her father was a part of the military, Amanda grew up navigating the healthcare systems and services available in multiple locations throughout Manitoba, Ontario and the North West Territories, often struggling to access the care she needed and deserved.

As can be seen, Amanda has a wealth of knowledge and experience that can inform CP-NET research priorities and projects. In joining the network, she has enjoyed having her voice heard, putting her education to use, and improving the lives of younger generations with an organization that listens to and works closely with all key stakeholders, such as herself. “They are actually listening to their stakeholders, to the people that this research affects directly, and they want to do better.” Amanda also appreciates the CP-NET approach to research. She says it’s more than data and written work; it’s also discussion and collaboration based on everyday experience and practice from multiple perspectives.

Put simply, engaging in research with CP-NET has given Amanda a greater sense of purpose and connection. “I matter, I matter because I have a disability, I matter because I have navigated the healthcare system,” she says. “I think that’s the biggest impact. And I think this could be one of the biggest impacts for other youth and young adults with disabilities.”

With this in mind, Amanda’s advice for other youth and young adults with disabilities who are thinking about engaging in research is just to try it. She explains that parents, clinicians, and peers can tell youths about the importance and benefits of research engagement, but they won’t know if it’s for them until they try it for themselves. And even if it turns out not to be for them, they still have a voice and made a difference. “A small action can shape a big result.”

This article was originally written and published as a part of CP-NET’s Community Profiles.

Michelle and Adam Shales’ experiences with the Trexo study at CHEO

Jessica Geboers
Michelle and Adam Shales with their son, Griffin

CP-NET Community Profile: Michelle and Adam Shales

The Trexo study at CHEO has been an innovative game-changer for Michelle and Adam Shales when it comes to physical therapy for their son, Griffin. Six months into using the Trexo, not only has Griffin’s gait and mobility improved, but it has also led to increased independence and curiosity about his surroundings.

The Shales originally discovered the Trexo gait trainer about three years ago through their research, looking for interventions that could improve Griffin’s gait and mobility. Then in 2018, they heard from another family that Trexo was developing a home model. When they contacted Trexo to inquire about purchasing a device for their own home, Trexo informed the Shales that they would be coming to CHEO, where Griffin is a client, to demo the new device. During this demonstration, Dr. Anna McCormick told the Shales of her plans to study the benefits of the Trexo for children with CP.

By the end of 2019, CHEO was ready to begin a 6-week study. While the initial Trexo session took place at the CHEO school, where Griffin was a student, the study has continued at home beyond that initial 6-week period.  

Though this was the family’s first time participating in a research study, they were keen to participate. “We had dreamt of an intervention that would allow him to learn to walk with a healthy gait pattern without spasticity and allow him to repeat those movement patterns thousands and thousands of times­,” says Michelle Shales. “And, the world gave us the Trexo!”

Not only is the Trexo a dream come true for Griffin and his parents but, as Michelle says, this study is an opportunity to prove the value of and continue to expand on these types of interventions. There is often a gap between the amount of physical therapy a child with CP needs and the resources available, whether that be appointment availability, treatment costs, public funding that limits the type and number of treatments per week, or just the number of hours in a day. While not replacing hands-on therapies, the Trexo helps fill that gap, both in rehab centres and at home.

Griffin Shales in his Trexo.
Griffin Shales.

With school shut down in the spring, Griffin and his dad, Adam Shales, had more time to fit the Trexo into their day whenever it suited them. Adam says, in the beginning, they were running through a bit of a boot camp. The goal was to spend about 30 minutes in the Trexo every day or two, followed by some time in his walker. With the Trexo, Griffin can get the repetition he needs to build the muscle memory and the strength to improve his walking; a level of consistent repetition, Adam points out, that could rarely, if ever, be achieved without this valuable robotic technology.

Another silver lining to having a Trexo at home was the ability to get Griffin in it when he was happy and well-rested. They may only get one shot at the centre, Adam points out, but if Griffin’s not feeling up for it at home, they can easily change gears and try again later. It’s a lot less stressful for the whole family.

After receiving training from the team at Trexo, the device was easy to operate and understand. “You don’t have to understand what it takes for a person to walk, what muscles need to be engaged in every phase of the gait pattern,” says Michelle. “All you need to learn is how to get your kid in the device.” Operated with a tablet app, Adam and Michelle can set the gait pattern and all other necessary adjustments for Griffin. All data is recorded and stored on the Trexo servers. And the Trexo team is always available as a resource.  In turn, the data on Griffin’s usage can be pulled by the Trexo team and fed back to Dr. McCormick and her team to inform the study.

Participating in this study, using the Trexo regularly has begun to change Griffin’s perception of his surroundings. Since March, he has progressed from struggling to take a single step in his Crocodile walker (a commercial off the shelf device), to being able to move around of his own free will on various types of terrain, both indoors and on more challenging terrain outdoors. “He’s starting to realize little by little that he has the ability to choose where he wants to go,” says Michelle. “­That’s new for him.”

Michelle looks forward to doing simple things with Griffin, like taking him shopping and letting him freely explore the aisles. Where he was once confined to his wagon, he now can walk the isles of a store, explore and choose a toy for himself. She also looks forward to the possibilities for Griffin when he returns to school: “He could walk up to a friend. He could walk up to his teacher. He could walk down the hall. He could walk or run in the classroom.” With the Covid-19 pandemic still upon us, for now, the Shales family is continuing to benefit from their Trexo at home and are enjoying watching Griffin gain more and more independence.

Originally published by CP-NET.

How one Toronto woman with a disability survives our winter

Jessica GeboersLeave a comment

I’m not too fond of winter. 

I know I’m not unique. Few people seem to like the cold, the snow, the freezing rain, the ice or the slush, regardless of whether they’re walking or driving. Shoveling seems like a thankless chore. And getting salt or sand on your shoes and boots is a pain. But having a physical disability can take the struggle to the next level.

I have cerebral palsy.

I live in Toronto, near Greek Town, and walk and take the TTC almost everywhere. The cold weather makes my already too tight, and often sore, muscles hurt even more. I walk pretty well with my canes in the right conditions, but a surprise obstacle or strong wind can quickly bring me down. Add in lots of snow and ice, and I fall a few times a week.  Sometimes I hurt myself, but more often I’m annoyed that my clothes get soaked, or covered in salt. 

I do have a manual wheelchair, which I use for speed and distance, and it significantly improves my stability. But it’s impossible to get over the snowbanks that our plows so thoughtfully push in front of crosswalks.

In my wheelchair, a snowbank might as well be a cement wall. With my canes, it’s a mountain to summit. I often fall, but I usually eventually make it across. On the bright side, falling into a snowbank can be a great way to make friends.

Getting around a snowbank in a wheelchair often means wheeling on the road between the first two shoveled driveways I find, while praying not to get hit by a passing car. Most people know what it’s like to get salt stains on their boots or shoes. In a wheelchair, those stains end up on your coat sleeves, which drag on the wheels, or pockets, which don’t usually stay behind the clothing guards.

I’m lucky to have the ability to choose between mobility devices; not everyone has that luxury.

If possible, I only go out when it’s above -5 degrees Celsius and/or there’s no snow on the ground. 

If I had my choice, I’d be a snowbird. My maternal grandparents are from Edmonton, but began spending winters in Palm Springs about 15 years ago. Since then, I’ve visited every year or two, usually in January or March, depending on when most of my family can go.

Palm Springs is pretty accessible, thanks to its aging population. Seniors and people with disabilities have a fair bit in common in terms of aches, pains and mobility challenges, and share an appreciation for anything that alleviates those concerns. I’ve noticed that we both tend towards guided tours: most aspects of the trip are sorted for you, particularly transportation, which is helpful for those of us who can’t drive or walk long distances.

My family and I spent this past Christmas in Palm Springs. It was fantastic to spend the holidays with my grandparents and to be warm, with no snow to contend with. Most days it was 15 to 17 degrees Celsius. The evenings were chilly, but not cold. Locals knew we were visitors when they saw us in a t-shirt and a hoodie at night, while they wore puffy jackets and toques. On Christmas day, they were surprised to see us swimming in the community pool.

Unfortunately, I’m only 30, and not in the position to fly South each winter. Here are some of my local winter survival strategies.

I order my groceries online from Grocery Gateway, and have them delivered about once a month. Honestly, I do most of my shopping online now. I even get my quad canes from Amazon. This was my last pair. 

Otherwise, I’m mindful of my outings, and complete multiple errands at one time. I plan my route along wider sidewalks, because they tend to be cleared of snow, or use connected buildings that I can walk through, to avoid the outside. I work from home whenever possible. This is particularly handy when freelancing.

I do struggle with mental health, so to keep isolation and depression at bay, I try to stay busy and social. Spending time with friends, on the phone or in person, is vital. We’ll often get together at my apartment and have food delivered via DoorDash or Uber Eats. Tacos from Mi Taco are my go-to.

I’ve also taken up sit-skiing. About four years ago, I decided I needed an activity to get me out of the house during the winter, and maybe improve my relationship with snow. I’m not athletic, but I love a thrill.

Weaving downhill in a sit-ski is a thrill, even if I fall on my face. I’m still learning, but make progress each season. Rather than a volunteer holding on to my ski to keep me up, they’re now a couple of feet behind, supporting me with tethers. So, I have to keep myself up and I get to make my own turns. I recently figured out how to catch myself with my outriggers, which are like ski poles, when I lose my balance, avoiding a full wipe-out. That’s a major accomplishment. I hope I can do it again.

Joining the Adult Disabled Downhill Ski Club at Mansfield Ski Resort has kept me moving and learning new skills, while making new friends, some now very close.  I’m even a little fonder of winter and dislike snow a little less, at least on the ski hill.

I still dream of being a snowbird. In the meantime, I’m making the best of winter in Toronto and on the slopes.

Originally published by BLOOM.

Thrill of the Hill

Jessica GeboersLeave a comment
Sit-skiing with ADDS volunteers at Mansfield Ski Resort.

I am in no way athletic and have little interest in sports. That said, I do like a thrill. I’ve always loved rollercoasters, and I jumped at the chance to skydive and bungee jump while travelling in New Zealand.

I learned to sail independently at Easter Seals Camp. It quickly became my favourite activity, and I’d be out on the water as often as possible while at camp each summer. I loved the freedom and the exhilarating feeling as the sails caught the wind and the boat gained speed­­––leaning to one side, almost tipping but never capsizing. Sailing is probably the closest I’ve come to participating in sports.

Fast-forward about 18 years. It’s October 2016, and I’m dreading the coming winter. I hate winter. The cold makes my muscles stiff and sore. The snow and ice make it challenging, and sometimes dangerous, to walk around with my canes; but even more challenging to get around in my wheelchair. So, not wanting to spend yet another winter pissed off and isolated, I joined the Adult Disabled Downhill Ski Club (ADDS) at Mansfield Ski Resort, through CADS Ontario. I thought it might improve my relationship with snow.

It turns out weaving down a hill in a sit-ski feels similar to catching the wind in a sailboat and is just as thrilling. I enjoy skiing much more than I thought I would. Yes, I love the thrill, but I also like the challenge of learning new skills. I often don’t even mind falling on my face, because it means I’m progressing and becoming a more independent skier.

I’ve also made new friends through ADDS. In many ways, these new relationships are the best thing to come from me joining the group. Not only do they make ski days more enjoyable, but they also extend beyond the ski season and improve my life overall.

I now have a slightly better relationship with snow.