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

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

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

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.

Some of my takeaways from the Brain-Child-Partnership Conference 2017

by Pinpoint National Photography
Youth of BCP2017

I had the pleasure of attending the Brain-Child-Partners conference here in Toronto on Nov. 6-7, 2017. I was there with CanChild but was also representing the youth voice.

The first session, Can We Fix the Brain? shared some fascinating and exciting therapies that help to rewire the brain and improve mobility. But it was the question posed in the title that really engaged the crowd, a question which quickly morphed into, “Should we fix kids with disabilities, and to what extent?” Given this is likely a common question among parents of newly diagnosed children, many parents in attendance stepped up to the microphones to over their thoughts and experiences. Listening to the many opinions on this question, a theme became clear to me:  We don’t need to be fixed; we need understanding and tools to help us achieve our potential and participate in society without stigma.

BCP2017, my first such conference, was an excellent example of research and community uniting around a common interest and goal — patient engagement. But how do we achieve effective patient engagement that satisfies all parties? This was a question that received a lot of attention but lacked a clear answer.

Several parents, both official presenters––including Rachel Martens, Julie Drury and Ann Douglas––and those in the audience shared their experiences advocating for their children, what they’ve done, learned and need to change. I appreciate these stories more and more as I get older because they help me to better understand the challenges that my own parents faced and concurred to give me the best life possible. And it is by listening to these experiences that help researchers and clinicians understand what and how they can improve the lives of patients moving forward. I particularly loved what Louise Kinross, editor of BLOOM, had to say about clear and effective communication––if you want to know if parents understand your message, just ask.

Louise also used one of my favourite quotes, from Albert Einstein, to illustrate her point: “If you can’t explain something simply, you don’t understand it well.” Those buried in science often seem to lose sight of the fact that not all of us can, or care to, speak science. Though we much appreciate their work, it should be communicated in the language of those it is intended to help, otherwise, it is almost entirely useless.

As important as the parent voice is, so is the view of the patient. Symon Hay captured the issue well when he said, “I think quality of life should be the root as individuals, health care practitioners, caregivers and researchers.” He also spoke about how lucky he was to have had a doctor who put more stock into who Symon was as a person than just his diagnoses alone. This enabled him to live a full and active life (We have a shared love of travel), when it seemed, on paper at least, that he shouldn’t. I couldn’t agree with Symon more.

I was thrilled to be included with and meet the small group of fellow youth with disabilities from across Canada at BCP2017. However, there should have been more of us. We should have been as considered and granted had as great a platform as parents.

Many of us with disabilities wouldn’t be where we are today without our parents, research, medical advancements and early intervention. For this, I am forever thankful to all those involved in my care and success. But it’s important to remember that we, the patients, lived it and are here to share our insights. This is especially important when discussing the transitions from childhood to adulthood or youth engagement. If you want to know what we think or need, either for ourselves or future generations of children and youth with disabilities––as you should­­––ask us.