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Suzanne

@suzanne__edwards

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Accessibility Standards Lead @airbnb 💻
Second participant of the @neurorestore.official Think2Go trial 🧠🚶🏼‍♀️
T8/9 complete SCI👩🏼‍🦽‍➡️
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The summer I learnt to walk… I kept a bit of a secret this year and was always very vague when anyone asked me why I was in Switzerland, but here’s the real reason. I was part of an incredible clinical trial that has allowed me to learn brain controlled walking. Note that this is not a cure for spinal injuries and I am still very much paralysed, but this demonstrates the power of science, research and technology! For the first time in nearly 15 years I am able to experience the world on two feet instead of a set of wheels! I have so much more to share about this experience, but it has been truly life changing and I am so grateful to the amazing team who I had the privilege of sharing this year with. I was heartbroken to leave but I remain part of this trial and have made some amazing friends for life. The biggest thank you to the incredible team of engineers, physios, surgeons and everyone else at Neurorestore and @onwdempowered - this was possible because of your hard work and you’ve truly changed my life 🥰 More to come, but I wanted to share because there are some news stories and documentaries coming out about it in the coming weeks / months. taken in Lausanne, Switzerland by @suzanne__edwards
83
a year ago
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My posts at the moment are jumping around and going back in time to the start of the trial, but here is my most recent progress - brain controlled walking by the beach at home last week 😍 It’s still very surreal to be doing this, and it’s a hard feeling to describe, but life is good right now! @neurorestore.official taken in North Devon by @suzanne__edwards
29
a year ago
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As a movement specialist, one of the questions I’m asked most often is what Pilates looks like for someone living with paralysis following a spinal cord injury. The answer is… we adapt. Every session with Suzanne is designed around what her body needs on that particular day. You’ll notice a spring attached to Suzanne’s leg. By supporting the weight of her leg and working with the resistance of the spring, we’re able to create safe, controlled movement, mobilise her hip and knee, load the tissues in a meaningful way, and encourage as much muscle activity and body awareness as possible. Every exercise is adapted. Sometimes I’m supporting the weight of Suzanne’s body or her legs, sometimes guiding the movement, and sometimes we’re simply creating awareness and connection. It really is a partnership. It’s hard work for both of us, but it’s always worth it. One of the reasons Suzanne and I choose to share these sessions is because we hope they’ll help someone else. After our last video, a lady who had been interested in trying adaptive Pilates contacted Suzanne. She told us she’d always been too frightened to try Pilates, but seeing Suzanne gave her the confidence to believe it might be possible. Suzanne was then able to connect her with an adaptive Pilates teacher closer to home. That is something we’re both incredibly proud to have been a small part of. That’s why we share these sessions. To show that movement doesn’t have to look the same to be meaningful. Every body deserves the opportunity to move. Movement is possible in so many different ways. It’s about discovering what is possible Sue & Suzanne xxx #woolacombe #sensegreaterpeace #adaptivepilates #spinalcordinjury #wheelchairlife taken in Woolacombe by @suzanne__edwards
2
2 months ago
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Some people inspire you without even trying. Not because of what they’ve been through. But because of how they choose to meet each day. After a fall in 2011, Suzanne sustained a spinal cord injury, leaving her paralysed from just above the waist down. I’ve had the privilege of working with Suzanne for some time now, and every session reminds me that movement is never about limitations. It’s about discovering possibility. Together we use the Reformer Tower to build the strength she relies on every day, create space through her spine and chest, improve mobility, reduce tension, and help her body feel more connected, comfortable and free. Alongside movement, we incorporate hands-on release and assisted movement to support her whole body. I seriously could not admire her more. Suzanne brings determination, humour, gratitude and an openness to every session. She continually reminds me that strength isn’t just physical; it’s found in the way we choose to meet life. It is a privilege to be part of her journey. #inspiringwomen #spinalcordinjury #adaptivepilates #wheelchairsports #pilatestower taken in SGP Pilates & Yoga by @suzanne__edwards
3
2 months ago
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Some of my favourite memories from the FIFA World Cup. Working on this event was one of the more challenging projects I’ve had at Airbnb, but experiencing the world’s largest sporting event was truly incredible. We hosted some amazing guests at some of the matches, gifted tickets to others from the disability community and connected with some of my favourite colleagues and friends in between matches. These pictures don’t show the behind the scenes - months of hard work ahead of the event, lots of flights and timezones, and getting my laptop out at every opportunity to catch up on my never ending to-do list. But the juice was worth the squeeze for this one for sure! As always, thank you @jackpatching for supporting me on this trip - your energy and excitement for the World Cup was infectious and you helped me find a bit of my sparkle ✨ And a special shoutout to @beyondmobility and @triride.uk - my new Aria chair handled the trip beautifully and I got a lot of compliments on it! And my @triride.uk is always my independence lifeline when I travel. by @suzanne__edwards
17
3 months ago
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Reformer + spinal cord stim session with SCI athlete, Suzanne. @suzanne__edwards completed her implanted spinal cord stimulator (eSCS) trial, and this session was 👉 using her SCS with her favorite reformer exercises - something she wasn't able to try with the research team, but she wanted to integrate into her home program. 💥 TDLR: The SCS integration was powerful, but not in the ways we expected. First, we used the "core activation" SCS settings in the core exercises, as we assumed would be appropriate... But the activation was kicking her off balance and was too chaotic for the desired fluidity - the technology isn't there yet for the nuance in core activation patterns. When I was demonstrating how the exercise was actually meant to be done, she pointed out how much my legs were involved, despite them not actually moving. They were stabilizing - anchoring - so that my trunk could perform the hinge, articulation or stability. Then it clicked: 💡 Let's try the Lower Body stim programs for the core work! And by golly - that was the ticket. 💥 I fully understand the lack of LE integration in paralysis and how that makes exercises harder, but it was incredible to see the direct comparison of the LE support on vs. off. And it was not subtle. I tell this story as a little reminder to think outside the box when it comes to your tools, equipment and recent developments in tech. Best use practices may not be so obvious. This tech was developed by engineers, and while it might work great in a lab, its going to take exploration by clinicians of many different types of backgrounds to optimize the day-to-day application. Thanks Suzanne for trusting me in this process! It was such a fun session! 👉For more information on in-person training intensives at ZN HQ in Bend, visit the link in bio. #pilatesforneuro #spinalcordinjury #reformer #paraplegic #spinalcordstimulator taken in Bend, Oregon by @suzanne__edwards
23
5 months ago
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What an absolute privilege to spend some time in beautiful Cortina for the Winter Paralympics. I had the best time with amazing people, and here are just some of the highlights. 1. 🤗 2. Going behind the scenes at alpine skiing 3. Witnessing sit skiing in all its glory 4. Meeting Milo for the first time 5. So much respect for how fast these athletes go! 6. Hanging out in the Athlete Village 7. Standing (that’s right) on my balcony 8. Possibly my favourite remote working spot ever 9. The best team on the only day we were all matching! 10. Behind the scenes at wheelchair curling 11. Not the most genuine smile because the gondola terrified me 12. Witnessing my first proper snowfall in years and it was magical 13. Milo 😍 14. Low clouds and snowy rooftops 15. Will definitely miss waking up to this every day 16. Passing the Paralympic flag to the next Games 17. Yeah it was high 18. Making deals with the King Pin in the village 19. Gold medal moment for Team Canada 🇨🇦 20. The end 😔 taken in Cortina d'Ampezzo, Italy by @suzanne__edwards
5
7 months ago
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What carries across from waves to snow? 🌊⛷️ Feeling empowered by adaptive skiing at the Paralympic Winter Games but don’t have a centre nearby? Suzanne explores whether the balance and control she’s developed through para surfing transfer to sit skiing, and what other parts of the sport carry over. Discover inclusive activities online and in your local area with #EveryBodyMoves powered by @toyotauk from @paralympicsgb_official #paralympics #surfing #parasurfing #adaptiveskiing by @suzanne__edwards
11
7 months ago
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🌊❄️ Surf > Ski, Para sport crossover! Epic session with @paralympicsgb_official @paralympics @everybodymoves @disabilitysnowsportuk discovering sit ski from prone surfing with Team England athlete & member of our Inclusive Line Ups panel @suzanne__edwards - full reel showing Suzanne’s skills to follow, she was epic. 👀 Thanks to @thesnowcentre for the welcome & @baden_knifton for facilitating! ❄️ We’re now even more excited for the Winter Paralympics to begin! 🌊 Ready to try surfing? We have lots of opportunities for para athletes to participate in a surf session at our roadshows this season, dates & locations to come soon! It’s the perfect way to try the sport with highly experienced coaches & in a safe & friendly welcoming way. 🤙 by @suzanne__edwards
3
7 months ago
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A week back in Lausanne. I feel so lucky to be part of the @neurorestore.official family. 🥰 taken in Lausanne, Switzerland by @suzanne__edwards
4
8 months ago
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For those who may not know Suzanne’s story, her life changed profoundly in January 2011 after a fall in Morocco caused extensive spinal cord injury. Paralysed from just above the waist, she has navigated the world from a wheelchair ever since. Yet what strikes me most is not her injury, but her presence. Over the past several weeks, Suzanne and I have been working together weekly on the Tower of the Reformer. Our sessions are a continual reminder of what is possible when the body is met with intelligence, curiosity and respect. We explore movement in many positions, supporting spinal freedom, opening the chest, mobilising the back, and strengthening what needs to stay resilient for everyday life. The work is both functional and expansive, supporting independence while also creating space and flow through areas that carry ongoing effort. Alongside this, I work hands-on with massage and assisted movement, engaging her whole body so energy can move rather than become held or guarded. The intention is always towards a more relaxed, released and integrated body, not simply doing more, but doing what matters. What I deeply appreciate is Suzanne’s tenacity and her consistently positive, grounded nature. She meets her body with honesty, humour and commitment, and it is a privilege to work alongside her. Sessions like these continually reaffirm why embodied, whole-person work matters so much. #spinalcordinjury #inspiringwomen #reformertower #movewell #woolacombe #braunton #ilfracombe #reformerstudio #northdevon taken in Woolacombe by @suzanne__edwards
0
10 months ago
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𝗣𝗮𝗿𝘁 𝟰 - 𝗠𝗮𝗽𝗽𝗶𝗻𝗴 (𝗔𝗽𝗿𝗶𝗹 𝟮𝟬𝟮𝟱) Mapping is a big milestone - it happens once everything is healing from the surgery and everything can start to get connected and tested. There are two main components of this trial that work in unison to make the brain controlled walking happen: 1. Delivering stimulation to the nerves in the spine to make the leg muscles contract. This is something the team have been doing for a number of years in previous trials, so they are very experienced. But there are tens of millions of combinations and ways that the stimulation can be delivered (amplitudes, frequencies and other smart things), so its a lot of trial and error to find the best stim to create a specific movement (like knee flexion or leg extension) 2. Interpreting my brain signals and my intentions to move my legs. This is a newer area of research (although is gaining a lot of momentum at the moment). But for this, I need to think about moving my ankle, knee or hip on each side, and my intentions need to be clear enough to distinguish which is which. The spine mapping starts in a supine (lying down) position and they basically send stimulations to the different electrodes in the lead implanted in my spine. They know the ‘hotspots’ for all the different movements we’re looking for, but there is a lot of fine tuning. And then when I’m sitting up, the lead in my spine moves a little bit (it’s not fixed to my spine, but is within the fluid) so stims need to be altered slightly, and then again when I’m in standing position. Thankfully there is a team of incredible engineers who are true experts in this area, and although the sessions were long (approx 3 hours at a time), it felt exciting and promising. It was obviously cool seeing my leg muscles contracting, but I’ve done a lot of FES in the past, so it’s something I’ve seen before. They seemed encouraged with the connections we were getting, and I got into the habit of thinking (and saying) ‘If you’re happy, then I’m happy’ to the team. I only understand a fraction of what they’re doing, so I would follow their lead with whether things were going well or not. 𝗖𝗼𝗻𝘁𝗶𝗻𝘂𝗲𝗱 𝗶𝗻 𝗰𝗼𝗺𝗺𝗲𝗻𝘁𝘀… taken in Lausanne, Switzerland by @suzanne__edwards
5
10 months ago
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