'I thought I had a hangover - weeks later I woke up from a coma unable to walk'
A woman who lost the use of her legs after contracting meningitis has been able to walk again with the help of a high-tech exoskeleton. Sophie Shuttleworth, 32, says new wheelchair users are often sent home without a standing frame - which can harm their bone density and put them in increased danger of getting hurt by a fall.
Sophie, a beautician, graphic designer and illustrator from Newport, first felt sick the day after attending an arts festival. She thought it might be sun stroke, or a hangover, but she soon found herself in hospital with meningitis.
She said: "I had a horrendous headache and sickness. I thought it was sun stroke. I had been out at an arts festival and it was the start of a heatwave. I thought it was a hangover at first and then sun stroke. It just got worse and worse and worse."
After quickly deteriorating, Sophie was put into an induced coma, and when she woke up she didn't know where she was. Sophie previously told WalesOnline: "The next thing I know then it was three and a half weeks later, I had woken up and it was weird. I just knew I was in a hospital and it had gone from me going to sleep and being able to move to waking up completely paralysed.
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"I literally said to my mum, 'have I had a car accident?' That was after a few days of coming around. At first I couldn't even speak, I couldn't move, I could only move my eye balls. My family were communicating with me by me blinking."
Sophie wants people to know the symptoms of bacterial meningitis, which can affect anyone and become a very serious infection of the membranes around the brain and spinal cord if not treated quickly. These are:
a high temperature (fever)
being sick
a headache
a rash that does not fade when a glass is rolled over it (but a rash will not always develop)
a stiff neck
a dislike of bright lights
drowsiness or unresponsiveness
seizures (fits)
By the time Sophie was discharged the infection had left her paralysed from the waist down. For the latest Welsh news delivered to your inbox sign up to our newsletter.
Since leaving hospital, Sophie has chronicled her rehabilitation on Instagram at @memyselfandmeningitis and says she has realised the barriers that exist for wheelchair users. She said: "Accessibility is rubbish. Even little things like the pavements going from my flat to Asda. Crossing the road and having to push myself down the 'drop kerb' which is still at an angle, if I push too hard I would fall backward and my head would be in the road."
Sophie has started using a BATEC - an electric handbike attachment for her wheelchair, and says: "Coming home with the BATEC has been a life-changer because it has enabled me to go on the bus, get into town, do some shopping… I could do that without it but it would be a lot harder, I would need a lot more upper body strength than I’ve got. I would need somebody with me because there’s no way I would be able to push up the kerbs - you can ask for help but I don’t want to!
"You can see people thinking 'wow, that's a good bit of kit,' and it is but it's expensive and not everyone can afford it. If people can’t afford it they would be disabled in the fact they aren’t able to leave the house. Without it I would struggle. I can’t transfer on my own so I couldn’t even transfer into a cheaper mobility scooter. I would literally be stuck in the house."
Often, people are discharged from hospital without enough support to live independently at home. Sophie explains: "Back in the day, they didn't send anyone home from the spinal rehab centre without a standing frame. They had all that funded for them.
"I was sent home without a standing frame. Unless my family had fundraised themselves I wouldn’t be able to go to Morello [a specialist rehabilitation clinic in Newport] - my family are fundraising like crazy, otherwise I would have been left home to see what happens. My osteoporosis would now be getting worse if I hadn’t gone private, which could lead to me falling and breaking a bone and needing a hip replacement.
"Nobody is to blame for that, there's not enough funding behind it; the NHS is in dire straits anyway because of funding. But what's more expensive - the hip operation if I break it, or giving me a standing frame when I leave hospital?"
But a remarkable advancement in technology has given Sophie a boost in her rehabilitation - and has the potential to help many others with spinal cord injuries, illnesses or long-term conditions. She had already been attending Morrello when the clinic gained access to the ExoMotus, a powered exoskeleton which helps people with lower limb impairments to stand and walk.
The powered machine helps people to physically move their legs, helps to prevent muscle atrophy, and helps people to regain movement they have lost - ultimately helping them live more independently. For some there is hope that it could eventually rebuild their ability to walk unaided, but it comes with a cost so the clinic is having to fundraise for access to it.
The device has helped Sophie with her bone density and circulation and improved her internal organ health by allowing her to stretch her body. She adds: "I knew I wasn’t getting back walking, it wasn’t going to be a miracle thing. But it passively moves me so I’m able to have that. I can’t feel anything below my shoulders, I’m like a floating head - I can’t feel myself walking but the first time I saw myself walking I cried straight away."
Sophie says she has "loads more independence" since using the ExoMotus - and adds: "I'm paralysed from the chest down but I'm starting to see muscles in my back and I have function in my lower back. I don't know whether it's happened because my spinal cord injury has started to have neuroplasticity where it regenerates around the damage over time, or because of the ExoMotus, or because of Morrello."
"I’m not supposed to have any core either but through going to Morrello and having a personal trainer I've managed to work on my upper body strength which helps me with transfers - they told me in Llandough I would never be able to transfer - and I've started boxing as well."
The ExoMotus at Morrello has helped people with chronic illness, paralysis following spinal cord injury and survivors of severe strokes to stand and walk. Sophie's family had to fundraise to fund her rehabilitation, including her dad and brother who worked with Pill Harriers Rugby Vets to organise a three peaks challenge and a charity game.
She is now promoting the clinic's fundraiser which she hopes will allow other people to have access to the ExoMotus. Morrello is currently the only place in Wales where people can use it, with Stoke Mandeville the next-nearest hospital for many. You can find the Morrello fundraiser here. Join our WhatsApp news community here for the latest breaking news.