Healthy life with a high level spinal cord injury

Healthy life with a high level spinal cord injury

We spoke to five people with a high level spinal cord injury about their experiences and tips for taking care of their health, fitness and emotional wellbeing (The letters after their age refer to their level of injury. You can visit our website to find out more).

Josh Harcourt, 29, C4 complete

“I used to be a gymnast who trained six days a week. I’m now paralysed, C4 complete, and have limited and weak movement of my arms.

I still have the motivation to want to train and keep fit. I do hours of physio and stand in a frame to help with bone density. I stretch to lessen spasms and keep joints and tendons from stiffening. These simple, basic things are really important for my health and other people with a spinal cord injury too. It’s not all about marathons and high intensity exercise.

It’s important to remember that health, fitness and wellbeing are different for each individual. For one person, it’s about eating healthily and looking after their skin to prevent marks and sores. For someone else, it’s being a para athlete that can push for miles at a very intense rate. But it’s not all about the latter which can be many people’s perspective.”

Tracy, 53, C3/4 incomplete

Tracy with her dog Ruby

“I’m out every day to walk my dog Ruby by the river, as this really helps me to relax and is great for both of us.

I also try to use the standing frame twice a week and I do breathing exercises. I learnt a little technique in hospital to expand my lungs fully: take a big breath, then two smaller breaths before holding.  This is good if I have some congestion on my lungs as it helps me to cough.

Generally keeping my mind healthy is easier than keeping my body healthy. I have a very full social life and never turn down an invite. But I have to be pro-active and be the one to arrange things to do with friends, that way I can check access and parking. I also volunteer for Back Up! which has given me a massive confidence boost and I feel valued and appreciated.”

Laura, 36, C5 complete

“I have to look after my body and maximise what I can through stretching, standing using a frame, and using an arm bike. I sing loudly in the car and shout.  This works on the muscles you breath with – the upper shoulders. At my level of injury, the diaphragm, intercostal muscles (between ribs) and abdominal muscles don’t work.  But if you work on the muscles that do function properly, it helps project your voice further and helps against chest infections. I make an effort to look nice and look after my skin. I eat healthily too which is difficult but I’m conscious I don’t want to put on weight. I still treat myself and go out for meals; I just have much smaller portions.

It’s tough to do stuff without people around me so I make sure I take time for myself. I walk the dog on my own, and even in the rain I still take the dog out. I did get stuck in a puddle once and had to call my personal assistant (PA). Now I always take my phone with me!”

Chris Yeates, 32, C6 complete

Chris and his son

“When I was newly injured health, fitness and wellbeing were a massive part of my life and my immediate focus. My consultant said the fact that I was fit and healthy before my accident was more than likely what helped me survive and this still resonates with me today. After being discharged from hospital, I tried all the possible treatments and therapies to see what movement would come back. Although I’m not walking, I’m glad I did it. I built strength, gained some more movement and learnt to understand my body more.

I’m tetraplegic and so getting an aerobic workout is what I’ve found the hardest. I use a rowing machine – it’s by far the best way for me to keep fit. Over the years exercising has slowly taken a back seat when life gets in the way: work, socialising, kids etc. It’s hard to find the right balance.

You’ll always get people saying, ‘so and so is walking, and trying so hard’, and I wonder if people think I’m not. These comments come from people who don’t understand spinal cord injury. It gives you an opportunity to educate them, but it can still be annoying.’’

Andrew Bush, 35, C4/5 sensory incomplete

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Andrew at a mentor training weekend

“When I had my injury 17 years ago, I thought enough physiotherapy could reverse any damage to my spinal cord. In the first few years, I purchased a hand and leg exercise bike. I made sure to use it as much as possible and to have a regular stretching routine that I could do in bed.

As the years have passed, my dedication to maintaining fitness was put to one side as I saw little improvement and other elements of my life were more important.

Some years on I’ve realized neglecting a structured routine has caused a number of health ailments – problems with joints (knuckles, knees and ankles), as well as an out-of-place hip which has accentuated the scoliosis in my spine. I believe a number of these elements have also led to an increased spasticity.

I am now making a concerted effort to stem the slow deterioration of my condition by building in a reasonable and structured exercise routine.

All of us with a spinal cord injury need to take control of our future wellbeing and understand the responsibilities we have to our body, mind and soul.”

If you have questions about any of the issues raised in this piece, please contact our Outreach team at or call us on 020 8875 1805. You can also visit our website to find out more about the services we offer and how we can help.


Ella’s Story: My first 5K

Ella’s Story: My first 5K

I didn’t agree to the Supernova lightly, as the idea of pushing 5k felt like my marathon.  It was actually my sister who suggested I sign up for the Supernova in the first place. As part of the fundraising team, she was recruiting participants and asked if I would consider doing it. I wanted to help but didn’t see the point in agreeing to something that I thought I couldn’t do. I’d noticed how long 5k felt when in the car, and I was very unconvinced that I was capable of pushing so far. I was also scared that although people who knew me would know this was a huge feat, people who didn’t might think 5k wasn’t very far. It all felt like a lot of pressure.

But I thought when had I last set myself a challenge? I had to admit that the possibility that maybe it was something I could achieve was definitely appealing. The fact that I would also be raising money for a fantastic charity that I know first hand makes a huge impact was also a hugely persuasive factor. So, with some encouragement from my sister and a bit of determined faith, I signed myself up.

As soon as I registered and created a sponsorship page, people knew and – more importantly – I knew that there was no backing out; it was happening whether I liked it or not! At that point in time, 100 metres got me out of breath and feeling dizzy. I knew that if I was going to make it to 5k I had to start training as soon as possible.

Ella training in Brighton by the seafront

My first long push on Brighton seafront was hard. My partner had invested in some new pushing gloves for me as an unsubtle nudge of encouragement and had agreed to walk alongside me. I’m sure he regretted this almost immediately. When I accidently pushed into him, I blamed him for getting in my way! It was a real comedy of errors and the sea wind was certainly not my friend that day! I was sure I wasn’t even going to make it to 1k but I was so stubborn that I tried to get as far as I could.

What my first distance push taught me that day was that I  would need to go slowly, to keep my breathing as regular as I could, and to take a break when I had a chance. I’d count in threes – one push, two push, three push and then have a break for the next few seconds. I set targets in numbers or street points and would make sure I knew when I’d passed certain distances. With each training session I always found the first 200 metres really tough – that didn’t change throughout my training, but after that first part I’d find my rhythm and it did get easier. My confidence gradually grew and the ways I managed the dizziness became better and I began to feel more positive about accomplishing the big 5k.

On the day of the event, I was all geared up in my bright orange t-shirt, covered in fairy lights with music pumping all around me: I was ready to go. I felt extremely anxious; I was dizzy before I had even started and there was a newly discovered hole in one of my gloves. Still, I didn’t doubt I was going to do it. I would give it my all and if it took me all night then so be it!

Ella at the Supernova 5k with her cousin and friend

I set off with my sister, cousin and friends walking beside me and was quite happy when the crowds left me behind and I had some space. I felt like I was going well but was suddenly confronted by what appeared to be a never ending hill! A new challenge to tackle and it wasn’t the only incline on the course. I used the downhill parts to rest and catch my breath and there were points on some hills I had to stop for a few seconds to break. I even used some wheelchair skills to zig zag up them! We passed strangers who told me to keep going and cheered me on, and once I passed the 3k mark I knew I had to keep going and finish it.

Finally, I could see the finishing line and knew I had made it. I may have been the last to finish, but I had completed it by myself and kept going even when my arms wanted me to stop. The overriding highlight was just that: I had pushed it on my own.

Since the Supernova I now realise that I’m capable of so much more than I realised before. This was something I would never have attempted three years ago. Pushing 5k still remains a long distance, but my fitness is better, my attitude more positive and as long as I don’t rush it, I can now push myself even further.

If you would like to find out about all our accessible fundraising challenges, you can visit our website or get in touch with Alex ( or call her on 020 8875 1805.

Back Up launches Family Outreach & Support Coordinator role

Back Up launches Family Outreach & Support Coordinator role

We’re thrilled to announce that Andrew Dickinson has taken over a new role at Back Up as our Family Outreach and Support Coordinator.

This unique new role, which is funded by a grant from the Baxter International Foundation, is a first point of contact for family members of people with spinal cord injury, providing much needed support and advice.

In his role, Andrew will coordinate a team of volunteers – all of whom have a relative or partner with an injury – to visit spinal centres, run information sessions and connect with family members on relative days. Back Up will also be piloting a new telephone support service for families too.

“With this new role in place, we will be able to connect with families as soon as possible after their loved one has a spinal cord injury,” said Andy Masters, head of Back Up’s Outreach and Support services. “At this point, many family members can feel guilty about asking for help because they feel the focus shouldn’t be on them. Our new Family Outreach and Support Co-ordinator will proactively reach out to families, make those all important early connections to offer support and refer them through to our other specialist services.”

Many family members suffer feelings of depression and isolation after the injury of a loved one. Our research shows that 33% of parents are clinically depressed, and 76% of siblings experience feelings of neglect and isolation.

Andrew knows first hand how vital this support for family members will be. He first became aware of Back Up when a family member of his was involved in a car accident in 2009 which caused a permanent spinal cord injury.

“Immediately after Sam’s accident it was hard to imagine that life could ever be the same again. We were plunged headlong into this whole new world, caught spinning in a maelstrom of new terms like “autonomic dysreflexia.”  We were lost and travelling without a map.

However, what Back Up gave us was the reminder that just because we currently felt lost didn’t mean that we were the first ones to walk this road. What is so amazing about this charity is that they recognise that this sort of injury affects everyone. My entire family experienced a trauma in that car accident and every one of us could benefit from support.

That’s why I feel so excited to take on this role within Back Up as the Family Outreach and Support Coordinator. I’m looking forward to building relationships with families affected by this injury, working with our colleagues in the NHS to develop support within spinal units and creating a space for family members to share and learn from each other.

Andrew Dickinson - Mentoring Coordinator
Andrew, Back Up’s new Family Outreach & Support Coordinator

This is something that has never been done before, our estimates suggest that there are 4,000 new family members encountering this world with every passing year and I am very much aware of the monumental nature of the task ahead. I can’t wait to get stuck in.”

If you’re a family member and need support, please email Andrew ( or call him at our offices on 020 8875 1805.

Volunteering at Back Up | How can you get involved?

Volunteering at Back Up | How can you get involved?

We believe that all of our team of over 400 volunteers make a unique and vital contribution to our work. Back Up was founded by volunteers and volunteering remains at the heart of everything we do. Our volunteers govern Back Up, run wheelchair skills sessions, group lead courses, raise awareness and funds, and support and develop our work in so many different ways.

If you’d like to become a Back Up volunteer, here are three options you could consider: become a mentor, volunteer as a nurse or personal assistant (PA) on one of our courses, or volunteer in the office.


If you or a loved one has a spinal cord injury, you could use your own personal experience to support others in a similar situation as a volunteer mentor.

Passing on those vital words of wisdom to someone adjusting to life post injury can be a life-changing experience for both you and your mentee.

“I have been a family mentor with Back Up for almost six years. When my son had his accident 13 years ago there was nobody to talk to when I needed to, as the mentoring service was not in operation at that time.

Caroline, Family Mentor

Being able to offer some of my time, share experiences and listen to other parents to support them through times of adjustment is very rewarding for me. Every call is different, every case is different yet we all go through the same pain.

Volunteering for Back Up is a way for me to help the charity to reach out and transform lives of families as well as those who are injured.” (Caroline, Family Mentor)

To find out more about becoming a mentor, please contact Polly by email ( or give her a call on 020 8875 6721.

Nurse or Personal Assistant (PA)

Back Up runs a range of residential courses for people with spinal cord injury to help them rebuild confidence and independence. To ensure that our participants can enjoy themselves and get the most out of our courses, we rely on the vital support of Nurses and Personal Assistants (PAs).

The role involves assisting with the personal care needs of spinal cord injured participants and volunteers, supporting participants to develop their skills and independence, and contributing to the positive experience of the group as a whole.

Getting the chance to see people grown in confidence – and being a part of that transformation – can be a truly rewarding experience. It also offers a unique chance to work with people with spinal cord injury outside a clinical environment whilst having plenty of fun along the way!

“Volunteering with Back Up has given me fantastic experiences and the knowledge that I’m helping to make a big difference. Seeing how the participants grow and develop on courses is so amazing and makes me feel really proud to be involved. Being a PA on courses has also improved my employability. Volunteering looks great on anyone’s CV, but volunteering with Back Up is a real plus.’’ (Amanda, PA)

Amanda (2nd from right) on the way to Sweden with the Ski Karting group members

To find out more about volunteering as a Nurse or PA, please get in touch with Merryn by email ( or give her a call on 020 8875 6741.

Office Volunteer

We are always on the lookout for volunteers to help out with admin and marketing support at our offices based in Wandsworth, South West London. Whether you know your way around an excel spreadsheet, have an eye for design, or some regular time to help out with general administration, we would love to hear from you!

Whilst you may not be out on the front line delivering the services, you will have the opportunity to do invaluable behind-the-scenes work that ensures the smooth running of our services and fundraising events. You’ll also have the opportunity to develop professionally and work alongside a bright and passionate team who will ensure that your time spent in the office is enjoyable and fulfilling.

‘‘I really look forward to going into the office and it has been an ideal stepping stone back to the world of work, but with the added  ‘safety net’ that I am working alongside colleagues who understand what it is like to have a spinal cord injury and the complications that go with it. I feel valued and supported and it has been excellent for building up my confidence, gaining new friendships and adding structure to my week.’’  (Tracy, Office Volunteer)

Tracy at out offices in Wandsworth, South London

To find out more about our office volunteering opportunities, please contact Kat by email ( or give her a call on 020 8875 6749.

You can also visit the volunteering section of our website to see all our other volunteer roles.

Andreea’s Q & A: Volunteering as a corporate buddy

Andreea’s Q & A: Volunteering as a corporate buddy

How did you first become involved with Back Up?

In November 2015, I received an email from my company asking for people to volunteer as Buddies on Back Up’s Ski Karting course in Sweden. I liked the idea but two things held me back initially:

  1. I knew nothing about spinal cord injury – I had never even met someone with a spinal cord injury. So I felt completely inadequate for the role – what could I offer Back Up and the participants?
  2. It was a busy time at work and I didn’t think my manager would let me take an extra week off.

But I was still interested so I applied on the last day before the deadline. Luckily, my boss is a snowboard fanatic and understood the benefits of the course so he happily signed off on me taking the week to volunteer. (He just came back earlier this year from Back Up’s Colorado Sit Ski course where he also went as a Buddy – so I managed to get him hooked on Back Up too!)

So you started off as a corporate buddy then became a regular volunteer. What prompted that decision?

The energy, the positive vibes, the amazing team work and the friendships I got out of the Sweden Ski Karting course were the main reasons behind my decision to continue volunteering with Back Up. That week in Sweden I felt I really contributed by just being myself and bringing a positive attitude. I learned from others, listened to what they needed, helped out wherever I could and had fun with everyone. It was quite an intense schedule: from coffee rounds in the morning at 7am, to going through the skiing schedule, to afternoon spa sessions and socialising till late. But I never felt tired.

My biggest worry was that I might hurt or offend someone I was actually trying to help by offering assistance. Was there a protocol? I didn’t want to be rude and do things for people that they’d prefer to do themselves. Thankfully, one of the volunteer nurses gave me the best advice at that point and said that if you’re not sure, just ask.

Following that discussion, I felt much more confident like I was part of a very well-functioning machine. And after a while, I felt like I didn’t even notice that some people were using a wheelchair. I just stopped seeing the chair and started seeing the person.

Andreea (left) with group members on Sweden Ski Karting course

After the Sweden Ski Karting course, I decided I wanted to do another course with Back Up as a buddy, to get to know some more incredible people and gain more experience so I could get trained up as a group leader.

I decided to volunteer on the Belfast City Skills course in August 2016. What really touched me was the progress I saw in the participants over the duration of the course. Everyone felt more independent and left with renewed self-confidence because of the skills they discovered (from balancing on their back wheels, to going down flights of stairs, to pushing with one hand while holding a drink – everyone learned something new and useful). Belfast is also a beautiful city and we had a very knowledgeable guide to take us around.

Andreea (right) with group members on Belfast City Skills course

What did you get out of your volunteering experience?

On a personal level, I learned a lot about the challenges people with a spinal cord injury face in daily life. I also gained self-confidence as I found out that I can try new things and do them well. I also made lots of wonderful friendships.

As a Buddy, I had to use my initiative a lot to recognise when tasks needed to be completed and when participants required assistance. This has transferred to my professional life as I can see when colleagues need my advice and where I can add value to a discussion.

The Belfast City Skills course group

Do you think more companies should create opportunities for their employees to volunteer?

Yes as it gives people a chance to get to know each other in a more relaxed environment where job titles don’t matter. You can also develop skills that are applicable to your job, but that you don’t get to explore so much on a daily basis. These will definitely benefit the company as people feel they are more valued when given opportunities to learn and grow. This year, we have 3 teams taking on the Back Up Snowdon Push. It just shows that people from different departments can come together and work as a team, and that they are eager to volunteer – if given the opportunity.

It’s fantastic to have this support for our buddy programme from BMO. The combination of a financial contribution from a company and the employees volunteering their time ensures that Back Up can continue to offer these life-changing courses. If you’d like to volunteer as a corporate buddy, please contact our Corporate Partnerships Manager, Sean McCallion,  on 020 8875 6747 or email  

Richard’s Story | Giving people a new lease of life

Richard’s Story | Giving people a new lease of life

Richard, aged 64, is a long standing volunteer power chair trainer and mentor. He has an undeniable passion for volunteering and enabling people to make positive changes in their lives. Seeing the difference when they break through a barrier or achieve a goal is a satisfying feeling, one that never gets old for Richard.

‘One of the most rewarding things is seeing people develop. When I first meet patients in the hospital, you see a lot of fear in them. And I think that’s how I must have been in those days. But you take them through a power chair training session and it makes a big difference. Then you meet them further down the line, and it’s great to see how far they’ve come on and what they’ve achieved.’

Richard first got involved with Back Up in 2009 during a visit to the National Spinal Injuries Centre, Stoke Mandeville. Whilst he was there, he heard a talk from a staff member about our mentoring service. When Richard sustained his spinal cord injury in 1980 as a result of a road traffic accident, mentoring wasn’t yet available. He saw the huge benefit the service could offer to people with a spinal cord injury and family members, supporting them to overcome challenges in daily life and work towards personal goals.

Luckily, a training weekend for new mentors was taking place the following weekend and a space had opened up. After he completed the training, he was matched with his first mentee: a man with a complete injury at a similar level to Richard. He’d had to move into a care home following his rehabilitation, and Richard mentored him during those difficult early days.

‘After we finished our mentoring relationship, Back Up arranged for me to meet him and his family. We decided to meet at an art gallery, as he was really fond of art. It was such a milestone for him to leave the care home for the first time. Meeting him and seeing what a change had taken place in him was wonderful.’

Richard became one of our first power chair skills trainers in 2011. He is among a team of 46 trainers that travel throughout the UK delivering sessions at all 11 spinal injury units. He also regularly leads the skills sessions on our residential courses. He gets to see first hand how our sessions give people a new lease of life:

‘Some of the participants on wheelchair skills sessions at spinal centres attend a couple of times whilst they’re there. I’ve seen many of them develop over that time, learn new skills and gain confidence. As a trainer, that’s really amazing to see.’

Richard teaching other trainers on our train-the-trainer course

Richard speaks most fondly of his time as a skills trainer on our Over 50s courses. He believes that age is no barrier to a fulfilling life.

‘You get people on the Multi Activity courses who are 80 years old and when they’re told that they’ll be doing kayaking, abseiling down a rock face, they turn around and say ‘no we can’t do that’. But when they actually do it, it’s amazing how much fun they have and what they get out of the experience.’

Richard (left) on Over 50s course with Calvert Trust instructor and course participant

It’s moments like these that are the real payoff for any volunteer – getting to see people grow and develop, learning more about what life still holds for them.

‘After 3 to 4 days on a Multi Activity course, you can start to see a change in people. The night before the last day we often all have a chat about what people have got out of the course. It can be quite touching.

Sometimes people get very emotional because they’ve achieved so much. They might not have been out of the house for months. They’ve lost contact with other people who have a spinal cord injury and now they’re doing all kinds of things!’

Richard is a truly special volunteer and we hope that he will continue to show people how much is still possible after spinal cord injury. He knows that it’s not a life ending, just a new one beginning.

To find out about all our volunteering opportunities, please contact Merryn ( or give her a call on 020 8875 6741.

Hugo’s story: Running For My Sister

Hugo’s story: Running For My Sister

Some people are clearly born runners; their long legs bound gracefully over concrete, one long limbed extension after another, a serene look of ease on their fair, unclammy face. They glide past you on the street as silent and fast as an archer’s release. Sadly for the majority of us this is not the case. The rest of us huff and puff our way across cracked pavement and over ungainly tree roots. Brows sweat profusely and headphones are imperative to block out the slap slap of flipper-flat foot on tarmac and mud.

Haile Gebrselassie I am not. There is no denying that I am firmly ensconced in this second category of runners. My stumpy legs belie my height and my hobbit-like feet make dumbo look like a ballerina.

I can’t pretend that it was my intention to ever compete in the marathon, it was not something that had previously crossed my mind and it was only due to a miscommunication with my over-eager sister that I got mixed up in the whole thing in the first place.

I was naturally tentative to start with, and my mind conjured seemingly watertight excuses as to why I shouldn’t take part: “Shouldn’t you be concentrating on your new job?” “Pounding those concrete streets is going to wreak havoc on your knees.” “Do you even realise how long 26.2 miles is?’’. However, by the end of September, largely thanks to the advice and enthusiasm of Back Up, those excuses had run dry and I filled in my application form.

Hugo taking a pit stop during his training!

Once I had been accepted to run on behalf of the charity the first few weeks were full of encouragement, advice and the occasional ‘you wouldn’t get me doing that’. I filled out the paperwork but my training wasn’t due to start until the first week of January. What better excuse was there than that to make the most of the festive period and eat and drink to my heart’s content? And so it was that on the January 3rd (the 1st and 2nd were bank holidays before you ask) I set off on my first run of the year – full of vim and fervour for the open roads and perhaps a few pounds more Hugo than when I had signed up.

The first few runs didn’t seem too bad, I was following a training regime downloaded from the internet that called itself ‘Running your first Marathon’ which put special emphasis on rest days and eating enough carbohydrates to fuel your body, two things that come very naturally to me. The hardest part of these first sessions was undoubtedly the winter chill that had settled on South West London. The biting cold  claws at any uncovered patch of flesh and reminds you every morning how easy it would be to just stay in bed. My brand new, hi-tech running trainers, with their extra breathable flyknit weave fabric and their durable yet malleable polyurethane foam soles, were no match for the nippy gust that freezes toes.

The reason that I am putting myself through all of this is simple: to do what I can to raise money for a charity that I know first hand makes a huge difference. The effect that a spinal cord injury has is devastating.

Six years ago my sister fell from a balcony and broke her back, which left her completely paralysed from the waist down. She spent weeks in a coma, followed by further months in hospital. The moment she was able to put her mind to her future, Back Up was there. They taught her everything there was to know about life in a wheelchair, from the skills that it takes to cover the unprepared high streets to how to educate people about life with a spinal cord injury.

Back Up were there when Sophie finished her rehabilitation, guiding her at every turn. The charity set her up on a trip to Colorado to try sit skiing for the first time and now she is competing to represent Great Britain at the next Paralympics. The work they do is immeasurable. That is why I am so proud to be helping out in my small fashion by lumbering my way around the streets of London.

So the weeks go by and the runs get longer and harder.  My fundraising page, that I check daily, sounds out the countdown in its jovial comic sans typeface. At the time of writing the big day is 60 days off and moral is high. The generosity of friends, family and even those who don’t know me but have been kind enough to donate, has blown me away and I am so grateful that they have given me this opportunity to help raise money in order to support those in need of Back Up’s services.

The weather is slowly improving and I no longer finish my pre-work runs under a cloak of darkness. A pesky muscle strain has slowed my progress over the last 5 days but with any luck the cocktail of anti-inflammatories and ice spray will see that it does not tarnish my ambitions. I still have a long way to go and who knows what obstacles will be placed in my path over the next couple of months. One thing is for certain, however, that Back Up will be with me throughout, just as they have been there for so many.

To help Hugo reach his fundraising goal, click here to make a donation. If you would like to register your interest for our London Marathon 2018 team, please contact Alex ( for more information or click here to see our other running/pushing challenges.