Wheelchair dance sport is for everyone

Wheelchair dance sport is for everyone

We recently spoke to Elaine Ball, a wheelchair dance sport instructor from WDSA UK,  who runs a Kidderminster dance group called the Emotions. She spoke to us about the benefits of wheelchair dance and how it is open to both manual and power chair users.

Why did you decide to become a wheelchair dance instructor?

I ran mobility, movement and music classes and at an open day, I was approached by a young lady in a power chair who asked if I would let her join my class. Over the months I got to know her better and could tell this lady was very able to express herself through music. I investigated wheelchair dance and could see through training, I could also help others in my theatre company to dance and expand our performance.

What does a typical session include?

Sessions, this depends very much on who is coming as everyone has different abilities. Some like the ballroom dances and some prefer more freestyle. I include a warm up routine, we sometimes will learn a new routine or work on improving technique. Most of my members are also part of Wheely Different, the theatre company I run with my daughter Ellie Mouzer and we are in demand to appear around the district with performance pieces that include inclusive dance, so there is always something to practice. The most important aspect of my sessions are that everyone has fun, we like laughter, singing and anything that lifts the spirit.

Emotions wheelchair dance sport group

What are the benefits of wheelchair dance?

I could write a book on the benefits. Learning routines aids mental function, improved self-worth, and the feel good effect is known to help release those endorphins.
As for socialising, a lot of the group are with me most when we prepare for shows and I can tell you we do a lot of socialising. We go out for meals, we go to shows, we went to the cinema but the lift broke and we ended being rescued by some handsome firemen!
I believe the confidence the group has gained through dance has had multiple knock on good effects. I know when we have performed anywhere, it has also changed peoples’ opinion of disability.

Is it open to everyone? Can people who use a power chair and have limited/no hand movement participate?

Everyone is welcome and majority of wheelchair users are in power chairs and its important to note that you don’t have to be in a wheelchair to take part. There are all kinds of ability levels in the group, some are helped by their partner who acts as a musical guide, others are in power chairs with restricted hand movement and some are in manual wheelchairs. There are all kinds of people who all contribute to the dance in whatever way is right for them.

If you would like to learn more about wheelchair sport dance, you can visit WDSA UK to find out about groups near you. You could also join us at the Back Up Ball – our biggest ever accessible party – which takes place November 18 2017 and put those new dance skills to good use!


Gillian’s story: Broken but not out

Gillian’s story: Broken but not out

An accident changed the life of Gillian Fowler, founder of charity BackStrong Trust, but she has been determined to live life as fully as possible.  Gillian opens up about her own personal experience of a life-changing accident, adapting to her new normal, and managing chronic pain.

I am someone who has always loved the great outdoors, with hillwalking, skiing, golf and horse riding being important parts of my life from a young age.  But in 2008, my life changed instantly due to a horse-riding accident near Aberdeen that resulted in my back being broken.

To this day, I have no memory of the accident.  I do remember excruciating pain as I lay on the ground, and I knew instantly that I was badly injured. I just didn’t realise how bad.

My recovery has been a rollercoaster, as not only did I have an unstable break of L1 and questionable break of C5 in my neck, but my spine did not stabilise and strengthen as hoped.  As a result, I had to undergo numerous major surgeries and deal with several spinal collapses. I also needed spinal injections to help with the pain, as well as years of physiotherapy.  I do live with chronic pain but I refuse to give in to this. Instead, I have learned to adapt and live my life as fully as possible.

Getting home in 2008 was such a huge occasion, and my fighting spirit was fully ignited.  My rehabilitation involved physio exercises that helped me to slowly building up from a few steps indoors, to managing walks outside.

The great outdoors have always been integral in my healing process (mentally and physically) as I have always found this to be where I am happiest – fresh air, beautiful countryside and being active.

It wasn’t until 2014, after yet another major spinal surgery, that I felt there was a small yet significant change to my back movement and my ability to walk more than a short distance.  Such was my belief that I had just taken a giant leap forward that I decided to set myself the challenge of climbing Ben Nevis with my partner.

To many, this would seem like going from one extreme to another, but setting goals has been so important throughout my rehabilitation that it seemed this was the most natural progression (though of course, I could have aimed a bit lower – literally!).

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Gillian on her climb up Ben Nevis

Without a doubt, it was a tough climb but it was also a beautiful one with great weather too.  As I can’t take weight on my back, my partner carried the rucksack with our supplies and clothing layers to the top – I was so grateful for him carrying all this!  When we reached the summit, I was just over the moon.  The mix of emotions was incredible – happiness, amazement at the scenery, back pain that I could somehow switch off my mind from, and sheer pride.

This walk was not only a fantastic personal achievement given the surgery I had only four months prior, but it showed me what was possible with a positive mental attitude.

As mentioned, a constant in my journey back to health is chronic pain as well as nerve pain both of which are quite literally debilitating.  The cause of the pain as well as its trigger can differ greatly from one person to the next. But it’s only when you are able to learn how to manage the pain that you can really start to live your life fully. 

I knew I did not want to be reliant on tablets either short term, and certainly not long term, so I started undertaking some online research into how to manage pain. There was so much information – too much information in fact!  But what did get my attention was reading how increasing your activity levels, and taking part in no impact exercise could be a powerful way to manage the pain and help reduce medications.

Every day, I would try to increase the duration of my walks, or the number of walks in that day.  The cycle of pain was very difficult to break because the exercise increased my levels of  pain as the muscles worked harder to protect the areas of weakness.  But I knew that was going to be the case, and I would be very careful to have rest, and monitor pain levels and recovery times.

Finally, after over three years, the ‘pain cycle barrier’ was broken and exercise actually decreased the pain. In fact, it would only worsen on days I was not active!  But I still have to work hard to maintain this.

The only time I now take medication is when my back is suffering from inflammation, nerve pain and spasms, but even then I will delay taking any tablets until I feel it is absolutely necessary.  But I certainly do have to be prepared to take them when away on long treks – and this is something I am completely happy to accept as I get so much enjoyment from being outdoors, even if it may result in pain!

Since 2014, I have grabbed the outdoor life with two hands, as well as been on a journey to bring hope to others who are in a similar situation to my own.  I have shared my personal story to encourage and inspire people to achieve personal feats, with my ultimate climbing achievement being to summit Mt Kilimanjaro in 2016 to mark the 8th anniversary of my accident and fundraise for my charity, BackStrong Trust.

Gillian at the summit of Mount Kilimanjaro

Although I live with chronic pain and the limitations due to my injuries, I have adapted to what is my new ‘normal’, and I am very much supported by my family and friends.

Everyone has their own journey through life, and what is clear is that it can all become overpowering and daunting when faced with life-changing situations.   We also struggle to discuss the mental health issues that may occur.  But my advice is that to take a deep breath, try to break down the issues into chunk sizes, and tackle them one by one, as well as asking for help when needed.  As I say in the mountains, “shuffle shuffle” – even if you’re taking baby steps, you’re still moving forward.  Stay strong. #ShuffleShuffle

BackStrong Trust is a Scottish charity which provides information and support to people with a spinal cord injury who are able to walk. Back Up also supports those who can walk through mentoring and our residential course called Next Steps which covers issues like neuropathic pain and fatigue.

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 outreachandsupport@backuptrust.org.uk 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 (Alex@backuptrust.org.uk) or call her on 020 8875 1805.

#StopPressureUlcerDay: Tips for prevention

#StopPressureUlcerDay: Tips for prevention

The 17th of November is #StopPressureUlcerDay and across the UK organisations have been sharing their best practise and raising awareness of pressure sores. To coincide with this, we’ve come up with our own top tips to help prevent them.

A pressure ulcer or sore is an injury to the skin and the tissue just underneath it. If you sit or lie in the same position for several hours, the pressure may cut off the blood flow to that area. This can starve the tissue of oxygen, causing it to die and a pressure ulcer will form. Often when we feel this pressure, the brain will send signals to let you know you need to adjust your position. However, if you have a spinal cord injury you may not feel the pressure build up because you have little or no sensation in that area or the ability to adjust your position. With this in mind, we’ve come up with some tips that can help you prevent a pressure ulcer:

  • Check your skin twice daily for any skin abnormalities or marks – anything that looks unusual.You should check your skin before you get up and when you return to bed. If you’re unsure about a mark on your skin, try applying pressure to it with your finger for a couple of seconds. If the colour remains the same and you don’t see blood flowing back to that area, it could be the beginning of a pressure ulcer.
  • If you wear tight clothing, be mindful of the friction that it creates against the skin. A lot of jeans will have tiny studs on the back pockets which could lead to a pressure ulcer. Similarly loose clothing may create folds that could also create pressure points on your skin.Clothing should ideally be of a natural material to allow the skin to breathe . If the clothing has some stretch, it will help reduce pressure when sitting in your chair.
  • Change your position regularly. ‘Pressure-relieving’ every 15-30 minutes will avoid putting pressure on one area and is a very effective way of preventing pressure ulcers.This can be most simply done by leaning forward in your chair. This will relieve the pressure over the bony parts of your bottom .
  • If you find a mark, think about whether there’s anything that you’ve changed recently in your routine that may have caused this: have you been using a new wheelchair, or a new cushion? Did you change your method of transferring? Have you got a new shower seat?
  • If you fall out of your wheelchair, it is essential that you check your skin for any bruises. A bruise or a cut may eventually become a pressure ulcer. If you notice either of these, make sure not to apply any pressure to those areas. They may take a long time to heal so you need to be extra vigilant.
  • If you notice something on your skin, but you’re not sure if it’s worth worrying about, take a photo on your camera phone. You can compare the mark to the photo a few hours later and see if there’s any change.
  • It’s incredibly important that you don’t ignore anything because the longer you wait, the worse it will get. If you find a pressure mark on your skin you should always stay off it until it’s gone. If you’re still concerned we recommend you contact your local healthcare professional, or your local spinal centre can also offer practical advice.

Further information on pressure ulcers can be found on the NHS’s website here and if you have any questions you can contact us on 020 8875 6723