Get yourself active blog

Disabled Man hand cycled the coastline of England in 27 days – The Robert Groves Story

Tuesday 29 August 2017

Robert Groves is a disabled man with a mission: to fight preconceived ideas of what is possible for someone who is paralysed below the waist, and raise awareness about many societal issues including climate change and the environment.

As a former body builder, cyclist and health club owner, I was a very active person. However, when an accident eleven years ago resulted in me becoming partially paralysed I thought my days of being active were behind me.

When I first became paralysed I didn’t leave the house for three years. I didn’t want to even sit in a wheelchair – I’d throw it against a wall if anyone brought it near! It was only when a friend tricked me into going to the London Paralympics (by telling me we were going fishing) that I saw other people like me.

It was after seeing Karen Darke cross the finish line hand-cycling that really motivated me. At this point in my life I was 17 stone and in a dark place. I wanted to escape the wheelchair and the bike gave me that freedom and independence. I’d always been more of an endurance athlete and wanted to get back out and see places I’d never seen. So, in 2014 I got a hand-cycle and never looked back.

Before embarking on my latest challenge I have hand-cycled from London to Brighton; completed a 24 hour endurance race at Thruxton Motor Circuit in which I qualified for a race across America in 2017, Ride100. I have also hand-cycled from Scotland to London (600 miles) in 5 days, raising £12,000 for charity.

My latest challenge was hand-cycling the coastline of England (2,500 miles) in just 27 days. I did this to demonstrate what disabled people can do and raise awareness of our dying oceans. My original plan was to finish and be greeted by the Prime Minister at 10 Downing Street and hand over a petition about the need to teach climate change as a compulsory subject in schools in England. However because of security reasons I had to finish the race at St Paul’s Cathedral in London, along with the other cyclists who joined me for the last section of my tour. Unknown and unaware to me, collecting and getting people to sign the petition (over 100.000 people signed the petition) became a political statement. I just wanted to show what people can do, how disabled and non-disabled people can use the roads and can ride alongside each other and show the damage that is being done to the nation’s coastline.

My latest adventure included highs and lows. The journey which started in Brighton pier on 2 July took me through the beautiful mountains of Snowdonia and all the way to Blackpool. I met many people along the way including an 8 year old boy Jack whose father flew him from Hong King to take part in the ride. Some people on the roads thought I was a geek in a fancy bike, despite the number plate on the back of the bike which described me as a disabled person. Although I don’t like the sign drawing attention to the fact I’m disabled, it is there for my protection. This however did not stop some motorist throwing a can of coke at me whichended up with me in a ditch. Other lows were tyre punctures, cars almost running me off the road, people insulting me and my computer system malfunctioning because it got soaked in rain.

Despite this I love hand cycling. It gives me my independence back, full control and the ability to go wherever I want to go. I now have the freedom that the wheelchair doesn’t give me. I loved the school visits too. I went to one school and saw a young boy about seven or eight years’ old who was in a wheelchair. His eyes lit up when he saw me and he was racing around alongside my hand cycle. His school is even fundraising now for him to get a hand cycle like mine. That’s the really rewarding side of what I did. It’s been about showing what disabled people can do. That you can get active. That you can have hope.

You really need to know what you are doing before embarking on challenges like this. I was a nutritionist at a health club for seventeen years. Your nutrition should always be the starting point – good healthy food that can develop your muscles. I was a member of a mainstream cycle club for three years. I learned a lot there in terms of road sense. You learn about pot holes, T-junctions, traffic, lorries etc. and how to become more confident on the road.

Although I did not get to meet the PM, the 109,000 signatures that I collected were delivered by UPS to the Prime Minister. My success has evidenced what disabled people can achieve alongside their non-disabled peers. Robert knew he achieved his success with support from non-disabled people and organisations like Stoke Mandeville and Halfords who raised thousands of Pounds along the way.

This isn’t the last you’ll hear from me either. At 61 I am already planning my next adventures, including a cycle ride from Washington DC to Los Angeles – almost 3,000 miles. Dover to Germany and possibly doing things in Australia, Japan, Hong Kong and New Zealand. I’d love to visit some Asian countries too. And I have a book coming out next year called One Man, One Bike.

Parallel London is the world’s first fully inclusive mass participation event, with something for everyone, no matter what your ability.

Achieving fitness, strength and independence through personalised personal training sessions – Georgina’s story

Tuesday 8 August 2017

This week’s personal experience blog is written by Georgina and her personal trainer and rehabilitation therapist, Joe.

Hi, my name is Georgina and I am 33 years old. This blog is written with my specialist personal trainer and rehabilitation therapist Joe to demonstrate how you can live with stroke and start regaining your strength, independence and confidence working with an ally in an inclusive gym. We have written this blog invite readers into my journey from living without a disability or impairment to now living with a stroke and my determination to regain some of my strength and vigour to live life as fully as I can. This blog is also written in a conversational way with Joe and I taking turns to explain what a session looks like working out in Breaking Barriers inclusive gym in Buckinghamshire.

Having lived for 33 years without a disability or major health condition, working as a sales manager in a successful London based company, exercising and going to the gym regularly, life took a dramatic turn for me in 2015 when I was struck with a number of strokes including a massive stroke that left me with physical and cognitive impairments.

I didn’t have movement on my left side, and my speech was affected. I needed help to do day-to-day tasks, and support from my family to manage through the day. I had some rehabilitation intervention on the NHS and I went home to live with my family in Buckinghamshire. When my NHS rehabilitation ended, I was looking to find ways to keep getting better physically and regain some measure of independence. I joined a gym, and began working with Breaking Barriers specialist personal trainer and rehabilitation therapist Joe Harman.

So now I want to invite Joe into this conversation and explain how specialist personalised training sessions can help people like me regain their strength and independence…

Joe: Specialist personal training after physical or neurological injury or illness, involves supporting people with injuries or disabilities in fitness based sessions, working one-to-one with a person to help them work toward their fitness goals. Sessions might focus on building up overall strength, balance, walking abilities, core or limb strength, mobility, flexibility, or reducing aches, pain and discomfort. Specialist based personal training is very different to traditional personal training. Some sessions are rehabilitation and recovery focused; these can be slow paced, involving stretches, or repetitive exercises, and may focus on building up a specific physical ability such as improving use of an arm, or hand as needed. Other sessions might involve more general full body movement or fitness challenges, adapting fitness activities such as using battle ropes or TRX to help clients build up overall physical activity and fitness levels.

Georgina: I work with Joe twice a week in my specialist personal training sessions, as well as having physiotherapy. I also have sports massage with Breaking Barriers which helps. My physiotherapist and my personal trainer liaise together to support me. The specialist personal training sessions are one-to-one, in the Breaking Barriers private gym. I have sessions focused on the use of my leg, and arm and building up my strength. Joe supports me to use a variety of gym equipment, including a TRX, bike, step, weight machines, and a specialist rehabilitation machine that I sit on and gets me using my arms and legs, and pushes me further every time, showing me my progress. Joe takes photos and videos to help me and my family see my progress which is really useful. This way I can see myself getting stronger and being able to move my arm with the kind of control I didn’t have a year ago.

Joe: Specialist personal training sessions can take place at a private gym, at people’s homes, in the park, or at a local gym. Training sessions can vary depending on what the client’s goals are and what each session will focus on. The focus could be on using and strengthening arms one week, using and strengthening legs the next week, or walking and balance the following week. We try to change the session plans every time, to make it fun and interesting but also to make it challenging, and for clients to feel they have been able to achieve more than they thought possible. At the Breaking Barriers gym we can put on music or disco lights if our clients want, to tailor it and make it as fun as possible! Exercise and physical activity can be fun for everyone!

Georgina: I enjoy my personal training sessions because they are personalised which I prefer to going to work out in a large gym. I enjoy the lights and music, but also just working out in my own space. Joe is very patient and encouraging with me, and I am making progress towards my goals. Joe experienced a serious injury himself and was therefore very empathetic, which helps when I am working with him as I feel he understands. Anything on my left side feels really hard and I have to work much harder on this side to keep moving. I keep positive though with Joe’s help, and keep going with the exercises he asks me to do. I remind myself that I am doing okay and I will keep going, and keep working hard to help my recovery, and help me stay physically active. I always feel better after I have had a session. I feel more confident and I have fun and leave the session in a good mood, after working hard!

Joe: Georgina is doing an amazing job – she stays positive and focuses on working hard. I know the sessions can be tough, because 7 years ago I went through the same process after a serious road accident. I understand what it can be like when a limb isn’t what it used to be or if you feel
more tired, or have pain. I know how hard you have to work to regain some of your strength and I help my clients do the same. Overcoming injury or finding ways to get physically active with physical disabilities can be difficult if you are not fully supported in an inclusive way. If you are in this situation consider getting support from a specialist personal trainer who understands and is trained in working with disability and injury and can help work with you toward your fitness goals. Support from a specialist personal trainer can be hugely beneficial and motivating, and can help improve physical and mental health, increase wellbeing and keep you active.

Georgina and Joe have sessions at Breaking Barriers gym, Aston Clinton, Buckinghamshire.

Breaking Barriers is based in Bucks, but supports clients in London, Surrey, Hertfordshire, Bedfordshire, Oxfordshire, Birmingham and the Midlands.

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www.Breakingbarriers.fitness (website)
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contact@breakingbarriers.fitness (email)

Maya the determined wheelchair racing whizz kid!

Tuesday 25 July 2017

This week’s Personal Experience Blog is written by Maya’s parents to share her amazing story with our readers and how even at such a young age she is developing into a potential wheelchair Paralympic champion  – enjoy

Maya is a 5 year old full-time wheelchair user who loves school, swimming, riding her trike, dancing and going to the skate park. Her favourite athletes are Dame Tanni Grey-Thompson and Hannah Cockroft.

Maya started using a self-propel wheelchair from a very young age. At the age of two Maya had built up enough upper body strength to learn to army crawl and this was when her true spirit began to emerge. We knew from that point that she wasn’t going to let her disability or doctor’s prognosis stop her aiming high and achieving her dreams.

Maya 3 years old ready for her first PGER charity run

After wheelchair services said she was too young to self-propel we searched high and low for light weight wheelchairs that may be suitable and, to our big surprise, just a few days before her 3rd birthday we were gifted Maya’s first light-weight wheelchair from a lovely family who faced a similar battle.  Maya soon got the hang of it and within a few weeks was whizzing around alphabet day nursery, Whittlesey, racing and chasing her friends. By the age of 4 she was completing independent fun runs, walks and events to raise money for charity including PGER fun run and Parallel at the Olympic park, London. This year at just 5 years old, Maya is raising money for local charities and is also fundraising for some small racing equipment by completing the Parallel 5 km event, Disneyland Paris 5 km race and the PGER as part of team We’re all mad here.

Maya has a busy sports and therapy programme where we incorporate the things she loves (mainly all things Disney) to work on her strength, flexibility, balance and coordination as well as her posture. Maya attends Alderman and Jacob’s Primary school, Whittlesey and with the help and support of her Physiotherapist they have developed an inclusive and varied programme for Maya to be involved in and enjoy at school.

Racing career!

Maya at Wheelchair racing training session

Maya started wheelchair racing after we saw a Facebook post about free taster sessions being held with Nene Valley Harriers in Peterborough. We were a little unsure if Maya would be big enough to give it a go but thought what’s the harm in trying. If anything, we just thought it would be great for her to meet other people. We encourage Maya to live a life without limits and that anything is possible if she puts her mind to it. We like to encourage her to find the ‘Maya Way’ of doing the things she loves. Racing or ‘running’ as she calls it, is another way of achieving her dreams. Wheelchair racing has also opened up lots of opportunities to try other sports including an inclusive sports day and local wheelchair accessible activities. Since attending the taster sessions Maya has been practicing hard, learning new skills and her confidence is soaring. There are also talks of Maya competing at her first ever wheelchair racing event on the 8th October at the PGER in Peterborough just 4 days before her birthday. What a way to celebrate turning 6!

Maya says,

“I love racing with my friends! Racing is fun. I love going really fast and winning!”

Follow Maya’s progress at: www.mayaswonderland.weebly.com

Help Maya reach her dreams at http://www.gofundme.com/mayas-paraolympian-dream

Parallel London is the world’s first fully inclusive mass participation event, with something for everyone, no matter what your ability. Find out more here.

‘I’m Back on the Dance Floor’

Tuesday 27 June 2017

This week’s Personal Experience Blog comes from Adrienne Armorer

In 2001, having left an evening of salsa dancing early, I was reminded that something was wrong. A guy that I’d danced with on numerous occasions and actually got on very well with told me I’d had too much to drink and ended our dance before the song finished. I wasn’t really a drinker and I’d only had water that evening. I decided to call it a night and limped to my car. Sitting in the driver’s seat I realised that I couldn’t drive as I couldn’t feel my right leg properly, or come to think of it, my right arm. This had happened before when everyone thought it was Carpal Tunnel Syndrome because I worked on a computer every day.

Having numbness down one side of my body resulted in an urgent referral to a neurologist. The night before picking up my results I did a google search of my symptoms. I’d never heard of Multiple Sclerosis but the Neurologist agreed with google and said it was a possibility.

I needed to live life while I could. I continued dancing and travelled as much as possible.

Fast forward to 2004, I woke up one morning unable to see properly out of one eye. I had Optic Neuritis and could finally get a diagnosis of MS. Fortunately my sight returned after 6 weeks and I continued to dance when I could. Salsa in Zurich, Valencia, New York, Cancun – wherever there was a salsa club. Regular classes kept me mobile and feeling positive. I really loved dancing.

Alas after a fairly ordinary morning in 2008, I had to hang up my dancing shoes – or so I thought. A massive MS relapse put me in hospital for 10 weeks. I remember my youngest niece saying to me “but Aunty you don’t take drugs so why are you in rehab?”

I was paralysed from chest down and had to learn to do everything again; who knew making a cup of tea was so difficult? By the time I left the Neurological Rehab Unit fortunately most of the paralysis had subsided; I was walking with an elbow crutch and using a wheelchair for longer distances. A stress fracture in my right foot, due to the way I now walk pushed my return to dancing even further away. Even though the fracture finally healed after more than a year, I’m still in pain and can’t stand for long.

Getting back on the dance floor

When I received the Lewisham MS Society newsletter detailing Step Change Studios and their upcoming classes, I was over the moon. All I needed to do was sort out childcare and I was good to go. But who else was going to come with me? I have 3 friends with MS who use wheelchairs: one was busy, one had had a fall so wasn’t up to it, the other didn’t reply to my message. Could I go on my own? I’d voluntary work in Kenya and Ghana on my own in 2007, surely I could do this. Couldn’t I?

I hadn’t been able to sort out childcare and so I decided to bring my 7 year old, her cousin who was playing at our home and her mother, my niece, with me.

Wow – a 50:50 mix of wheelchair dancers and those without. Cool! A little warm-up and then we were off. I’m not a regular wheelchair user and get fatigued quite easily, so I was worried I wouldn’t be able to keep up. It was fine. Nuno and Rashmi are on hand to help and answer any questions. I also needed to ask one of the other wheelchair dancers how he was managing to turn his chair using just one hand. The hour flew by. What a great afternoon. We left on a high.

The all-inclusive dance class that Step Change Studios is running is perfect. It’s good exercise, great fun, a lovely way to socialise and most importantly, I’m back on the dance floor! You don’t need any previous experience – even my 7 year old now loves to spin me around in my wheelchair having watched the last 2 classes.

About Step Change Studios

Step Change Studios is a pioneering dance company committed to making Latin and Ballroom dance accessible for everyone. They offer fun, engaging opportunities for disabled and non-disabled people to dance. They cater to all ages, abilities and needs. Step Change provide weekly classes in London; deliver dance in schools, colleges, social care, healthcare and community settings; and create imaginative bespoke dance projects. Their goal is to support everyone to achieve their dancing ambitions – whether that is to dance for fun, to be active, to perform or compete.

For more information contact Step Change Studios Founder Rashmi Becker on 07976 363861, or email: contact@stepchangestudios.com or visit: www.stepchangstudios.com.

On Saturday 10 June 2017, Step Change Studios launched its inclusive Latin and Ballroom dance classes at the Abbey Centre in London. Find out more.

Women’s Sport Week, Disabled Women’s personal stories…an inspiration

Its women’s sport week and here at GYA we have met some amazing disabled women who find getting active and participation in sport and other physical activities  not only healthy but also as a way of challenging society to think differently about disabled women and appreciate the vast diversity that exist in our communities.

The following experiences and stories inspire us and we would love to share them with you again…enjoy!

why horse are my therapy

always exercise-sometimes sport

-from-dancing-to-taekwondo-to-competitive-bread-making

 

Why horses are my therapy

Tuesday 9 May 2017

This week’s Personal Experience Blog comes from Britta Francis

Despite having complex medical problems, I have ridden a horse for most of my life. My spine has grown abnormally and twisted itself, which has resulted in my having multiple operations over the years. This has left me in a lot of pain, needing pain management and physiotherapy, which Riding for the Disabled Association (RDA) helps me with. Of particular help was ‘hippotherapy’ which is physiotherapy on horseback. This has helped develop my core stability, posture and balance.

It was through my horse, Harry that I discovered RDA and was selected for their Regional and then National Championships. This gave me a true sense of pride and achievement, with rosettes, prizes, trophies and photographs as permanent lasting memories.

One of my highlights was spending just under a week at The Royal Bath and West of England Show as part of the British Horse Society ‘Pageant to the Horse’. Harry loved being centre of attention in the big main ring. Our bond was so strong that Harry was able to sense what was needed, right down to doing things like using his muscles differently when I lost my balance.

He was my reason to try and get up every day, even on the days when the pain, illness and fatigue were overwhelming, and everything was black.

Following on from this success, I went on to the British Dressage South West Para-Dressage Squad, progressing to not only riding for the south west of England, but for England as an entirety. I had professional support from nutritionists at Bath University, developing my body to ensure there was sufficient strength, both physically and mentally, to compete.

Unfortunately, I underwent traumatic spinal surgery in 2012, first needing to have my spine broken and then having it re-set with screws and rods. This coincided with Harry being put to sleep, which was devastating.

Not only did I suffer from enormous amounts of pain, but I also became increasingly reliant on drugs to manage this pain. I lost my independence, and without Harry, started to lose friends and contacts from riding clubs and teams.

During the following two years I had to undergo four spinal operations, one of which was emergency surgery. This meant I had to learn how to stand, walk, and go up and down stairs again after each of the operations.

Two years after my last operation I was able to get on to an equine simulator, available at Avon RDA. I spent about a year on the simulator and then was finally able to ride a ‘real’ horse again at Urchinwood Manor Equestrian Centre, which is Accessibility Mark Accredited.

I now ride for about half an hour, once a fortnight, which gives me a huge sense of achievement and enjoyment. Importantly, it also gives me the opportunity to socialise with like-minded people, and make new friends.

My focus for the future is to aim high and dream of competing once again.

About Riding for the Disabled Association Accessibility Mark

Riding for the Disabled Association (RDA), in partnership with the British Equestrian Federation’s (BEF) participation programme launched the revolutionary Accessibility Mark scheme with the aim of getting more disabled people to participate in riding.

Accessibility Mark status is awarded to a riding centre that has been approved by RDA following training and assessment. The close link with the RDA means that they offer continuous support to the establishment to ensure they provide a first class experience that aims to be hugely beneficial.

For more information contact Jacqueline Spouge or Tim Smith at TSM on 01724 784600.

There are currently 37 Accessibility Mark approved centres across the country. To find your nearest RDA Group or Accessibility Mark centre visit www.rda.org.uk.

Read Inclusion London’s new resource to help you understand why physical activity and sport should be on a Deaf and Disabled People’s Organisation’s (DDPO) agenda and the important role DDPOs can play in ensuring that local physical activity and sport becomes fully inclusive.

Always Exercise, Sometimes Sport

Wednesday 26 April 2017

This week’s Personal Experience Blog comes from Sue Kent from Mumbles, Wales

My name is Sue Kent and I am a sports massage therapist with a difference – I use my feet to provide massage in my clinic in Wales. I am the first person to gain this qualification using my feet and have had the privilege to work at the Paralympics in 2012. I have full use of my legs but 8″ arms and 7 fingers.

My disability was caused by the drug thalidomide. Thalidomiders, as we are collectively known, were all born in the late 1950s and early 1960s. There are just under 500 of us still alive in the UK today.

As a result of my condition I use my body in different ways to cope with normal everyday physical tasks. Exercise is one of the major factors that can prevent and often reverse some of the effects of the constant wear and tear on my body.

One of the reasons I am as fit as I am is thanks to my mum. At the age of five I was put into ballet classes. It was not the ballet itself, but the pre-dance stretches, that gave me the ability to reach my head with my toes. This gave me the independence to be able to wash and brush my hair and dress myself. The ballet itself gave me the balance to stand on one leg in a balanced position. It set me on a life of stretching. When I got to the age of fourteen I realised I wasn’t going to be a ballet dancer and moved to martial arts as they have similar warm-up routines. Since the age of 27 I have done yoga every week.

I was also lucky enough to attend a school with a swimming pool and had a couple of great teachers, so I have swum for as long as I can remember. Swimming is one of the safest exercises and helps strengthen the heart, the legs and back without excessive wear and tear on the hips and knees joints. It also makes me feel graceful in the water. My arms move freely and different muscles activated.

At the same time I was taught to ride an adapted bike and I still ride every week in the summer months with friends. I don’t ride in winter as my hands cannot grip through gloves.

I suffered with asthma from childhood into my early 40s, so had always avoided running. But after listening to a disability podcast by BBC Ouch featuring a lady who was told she could never run as her lungs wouldn’t take it, but with interval training had completed a marathon, I followed her example and learned to run short distances – a maximum of 3 kilometres. 5 kilometres always seemed beyond me but my coach and my husband managed to drag the distance out of me for two big disability events. Having to achieve longer distances takes the joy out of it for me. Generally I would rather do my varying sport and exercise for fun rather than enter events.

10 years ago I stumbled across a canoe with pedals not paddles by Hobie, I had watched from the shore as my family canoed each summer and was overjoyed that I could now join in.

At the age of 40 I took up skiing. I started in Whistler, Canada because they are really set up to help disabled people. Just two weeks there gave me firm foundations and lots of confidence. Skiing without poles involves a specific type of fitness. Training would start six weeks before the trip so my stomach muscles could get me off the floor should I fall, and my leg muscles were strong enough to move me along on the flat bits, I loved skiing but have taken the decision not to continue as I do not want to risk a broken limb at the age I am now. I also gave up dingy sailing two years ago, much as I love it I was getting too bruised and as I get older I recover more slowly from injury so I focus on activities that are less damaging.

I provide relief and succour to athletes taking part in local triathlons and the Welsh Ironman. At these events, when I am not working, I venture out to watch the athletes and marvel at their madness and determination. As you have read, I can swim, cycle and run, and so at the age of 53 I took part in the UK’s first inclusive mass-participation sports event Para Tri, which took place at Dorney Lake in Windsor. Every barrier that a disabled person could think of, (and believe me I tried), was removed where possible and every assistance was offered.

Personally, having had two falls a couple of years ago, I was aware that I needed to keep on top of my physical health. So when approached to do this event I thought it would be interesting to see what benefits it brought to me.

I decided to go all in and take on the longest of event, the Full Para Tri. I had seven weeks in which to learn to swim 750m on my front, to cycle 20k non-stop, and the worst thing for me – to run 5k. Cycling and running these longer distances I did get some nerve entrapment in my lower back and had to have physiotherapy and sport massage to halt the onset of sciatic pain but it was worth it.

The highlight was to see families and friends with and without disabilities working as a team and experiencing a sporting event together.

There is a new event this year in August run by Sophia Warner, which will provide a springboard for families and individuals to expand their sporting lives and give them confidence, health and abilities other arenas cannot provide.

For me, having any physical disability creates vulnerability and this increases the risk of having an accident or getting an injury. The value of exercise is perhaps more important to those without disabilities to protect long-term health and independence. Exercise and strength conditioning of muscles can increase strength, core stability and balance; by doing this it helps reduce physical vulnerability.

Find out more about Sue Kent by visiting her website at www.enjoyfeet.co.uk or follow her on Twitter, Facebook, or Instagram.

If you have a story to share about how you get active then get in touch with us.

Experience only comes with time and practice, trying things out and failing sometimes

Tuesday 11 April 2017

This week’s Personal Experience blog comes from Simon from London

I am not sure if I should be blogging about my experiences in sport as even I am not sure if I qualify as disabled or not! I do not consider myself disabled for the condition I am writing about, but the medication I take to keep myself alive certainly has a detrimental effect on my health and ability to exercise, so you make up your own mind.

Simon with the Olympic Torch at the London Aquatic Centre

I contracted Hepatitis B in 1984 and unlike most people I did not clear it. It stayed with me, slowly destroying my liver. In 2001 I started to become unwell and by the end of the year was I unable to walk more than a few feet. The toxins building up in my body meant that I wasn’t able to think rationally. I was constantly cold and had ascites, the build-up of abdominal fluid, so was having fluid drained on an almost daily basis. My muscles had become so depleted that my skin wrinkled around me.

Placed on the organ donor register I had to wait for a liver to become available and to be a match for me. I was lucky; I got the call from the hospital. A liver was available for me. I quickly gathered what I needed and was transferred to hospital.

I received a perfect match. I was told that my donor’s liver had immunity to Hep B either because my donor had acquired Hep B and recovered or he had been vaccinated.

Recovery was quicker than I expected. I stayed in King’s Hospital for two weeks and then went to the Royal Sussex County Hospital in Brighton where I lived at the time. A week and a half later I was home. I was still weak from the year I had lived with a poorly functioning liver and the effects of the operation, but with a strong new liver I was now able to get about and repair the damage previously done to my body.

I lived one block from the seafront so I would walk each day to the sea and back. A little later I reached the first peer, a week later I could reach the second peer. It was time to get a bit more active so I rode my bike and got in to the swimming pool.

I had heard of the British Transplant Games before my transplant and knew that if I received a transplant I would want to enter them. They are annual games open to anyone who has received an organ transplant. Starting in 1978 in Portsmouth, they have continued annually ever since.

Kings team winning swimming relay at the British Games

My first games were in Norwich 2004. Competitors are allowed to enter five events, each competing for their hospital team. I chose a 20 km bike ride and four swimming events. Medals are allocated in 10-year age groups. I came last in the cycling but won gold in the backstroke. I was amazed and looking back now, as a more experienced athlete, even more amazed, as I was completely new to competitive swimming, having only swum in competitions while at school.

A few months later I received a letter informing me I had been selected to join the British Team at the World Transplant Games in London, Ontario Canada in 2005. Now some serious training had to start.

I was lucky that I could train at Central YMCA and had a great coach who helped me with starts and turns (the fastest part of any race). He entered me into a North London Masters swimming competition as I needed competition race experience before entering the World Games.

In my first race at the North London Masters my goggles filled up with water as I dived in and my trunks came halfway down my bum with the force of the dive. Two good lessons learnt! Always tighten goggles and tie up trunks, thankfully neither has happened in a race again.

For the Games in London, Ontario I had entered a 200 metres freestyle which was my first race. I went out far too fast and by the third length lactate had built up so much I felt I couldn’t carry on but had the final 50 metres to finish. I gave up with the tumble on the turn and slowly came in last. But another lesson learnt.

My other races went without success; I was becoming despondent. To come all this way and to have trained so hard to not get a medal was unthinkable. Everything was left to the last race: the 100 metres backstroke. I had to give it everything but I knew now not to give everything in the first length and to leave something for the finish. When I looked up I couldn’t believe it. Third. A bronze medal! Something to take home! I was so pleased. To get a medal at my first World Games, whatever the colour, to me it was gold. Since my first World Games I have competed at four more World Transplant Games in Bangkok, Gold Coast, Gothenburg and Durban each time winning at least one gold medal.

British Team at the European Games in Krakaw

I now look back on Canada and I realise how inexperienced I was, but experience only comes with time and practice, trying things out and failing sometimes. Training is often a hard slog but when I have a competition to aim for it makes the training worthwhile.

Without competitions, I would not swim half as much and without the training I wouldn’t be as fit as I am. I am not saying I am super fit. The medication I take to stop organ rejection takes its toll on my muscles and they ache more than they should, so I have to train to my ability, not over doing it. Avoiding injuries is important, over-training and getting an injury or an infection may mean many days or weeks out of the pool and it takes time to regain strength and stamina after a break. So, continuous is always best.

Simon with Gold and Silver in Durban World Games

I do feel that the advantage of training is that it keeps my general health good. There is no way of proving the benefits, but 15 years on from my transplant I seem to be fit and healthy for someone approaching 60. I have learnt that you can only be fit for purpose; I am fit to swim but if I do some other form of exercise I get muscle pulls or strains so it is a balance to be fit for competitions but also fit for life. Keeping supple, doing yoga, doing stretches, doing circuit training, doing simple other things can easily be forgotten when concentrating on one thing, but to be fit for life to avoid as many of the modern-day health problems has to be a priority for me.

My current training is in preparation for this year’s World Transplant Games in Malaga, Spain at the end of June. By the time of the games I will be a “young” 60 in the 60-69 age group and I am aiming for gold again! Although the World Transplant Games are supported by the Olympic Federation and we compete as the National Team for Great Britain and Northern Ireland, we do not get any government or lottery funding. All team members and the support staff have to raise their own funds to cover the cost of games registration, transport to games, accommodation and living costs while at the games as well as training costs and even buying our own UK team kit. Sometimes fundraising can be harder than the training! But it is always worth it as it a fantastic way of promoting the Organ Donor Register. Each time I race I race in honour not only of my donor, but of all organ donors who give the gift of life.

To sponsor Simon to get to the World Transplant Games this year click here: http://uk.virginmoneygiving.com/SimonWorldTransplant2017.

To find out more about Organ Donation or to add your name to the register click here: www.organdonation.nhs.uk.

If you would like to share your story please get in touch with us.

I get active my way: From dancing, to Taekwondo, to competitive bread making.

Tuesday 28 March 2017

This week’s Personal Experience blog is written by Jan from Cheshire.

I’ve always enjoyed being active. In the past I was a member of a drama class with a local theatre group at the Mulberry Centre. I also used to love going on an adapted bike with my carer, which I was able to control and pedal by using my hands. Unfortunately since breaking my leg I have been in a wheelchair and have been unable to get back on the bike.

Although this setback has stopped me from cycling (for now), it hasn’t stopped me from being active. I currently take part in a dance class on a Tuesday morning which is led by Cheshire Dance, and I also do Taekwondo.

In the dance class we do a mixture of creative, fun and improvised movements. It’s great because I am given the opportunity to keep my legs moving – something I don’t normally give much thought to when I’m in my chair. I really enjoy dancing, moving to music and making friends at the same time.

One of my favourite reasons for going to Cheshire Dance is connecting with others in the group. I like working in small groups to create dances for creative tasks and then sharing our performances with the rest of the class. Working in close contact with other participants helps me to work in a tactile way. For example, one of my favourite tasks is moving in space and interactng with the group by making eye contact and connecting body parts with other dancers, and dancing with other members of the groups. I am particularly good at partner exercise where we mirror each other in contact.

The dance sessions also explore different sensory elements. Some weeks we explore rhythms and use different musical instruments. My favourite is the sensory drum as it sounds like the sea. We play with tipping movements, imagery and wave-like motion. Cheshire Dance uses lots of props to help with the sensory element and to assist with movement and engagement. I really enjoy playing with spikey balls, rolling them up my arms and reaching to the back of my neck.

I have performed in lots of difference dance projects for big audiences including the Moment When (2012), Stir in Chester (2009), and lots of performances in Cheshire. Next month I have been invited to perform at NOW Dance platform at the University of Chester. You can also check out this film that we made with Cheshire Dance. It was great fun to be part of and I really enjoy watching it back.

In contrast to Cheshire Dance, Taekwondo can be competitive. At the end of every session we work in twos and compete. Usually it’s who can hit the pads first that our trainer is holding up. We always do a best out of three.

Competition doesn’t always have to be in the form of a traditional sport. I am also part of a competitive bread making club which takes place on a Friday morning at the Wesley Church. We always compete about who has made the best bread, but usually it’s too close to call. Bread making can be tougher than you might think and we give it the full treatment: kneading, egg wash and decorating the bread with seeds. This works your upper body muscles as well as your fine motor skills.

Dancing and doing Taekwondo help me to relax but also help to keep my muscles going. I really like working hard and then relaxing after the sessions. Before the sessions I’m looking forward to it; during the sessions I’m enjoying it and I’m having fun; and after the sessions I usually think ‘I don’t want it to end’ but also ‘well done me!’

In spite of this, it’s not always easy for me to take part. Every now and then I do get frustrated, especially when I can’t manage or when I want to join in but I can’t for whatever reason. It can be discouraging when my hands get tired quite quickly but I don’t like giving up!

My advice to anyone would be to join in and always give it a try. Give it a go and see for yourself if you like it. That’s what I had to do.

I feel I am given choice and control over my personal budget and I’m lucky that I get to do most things I want to do. I’ve even managed to go to a three day conference in Blackpool using my personal budget. I would encourage anyone who has a personal budget, and who wants to use it to get active in a way that’s right for them, to speak up and make their voice heard.

Find out about Get Yourself Active’s partner in Cheshire: Cheshire Centre for Independent Living. or see how the Cheshire Football Association is helping to get disabled people active.

Both Jan’s dance and Taekwondo classes are held at the Canal Street Centre at Vivo Care choices.

DanceSyndrome would like to invite you to a special preview of “Superabled” a film about our Founder Jen Blackwell and how her life has changed since starting the charity.

Being active improves my daughter’s quality of life

Tuesday 14 March 2017

The below case study came from the Disability Rights UK Personal Budgets helpline and inbox. Names of people have been changed as the caller wishes to remain anonymous.

By Banane Nafeh, Personal Budgets Advisor

Susan was concerned that her Local Authority (Haringey) had denied her 20-year-old daughter, Sarah, the right to use her Personal Budget for outdoor activities.

Sarah receives a Personal Budget to assist her with her Down’s Syndrome, learning disabilities, delayed speech and her difficulty socialising with her peers.

Sarah loves being active and wanted to use her Personal Budget to join a gym. Her main dream was to use it for horse riding. However, in July 2016 Sarah was told by her social worker that her Personal Budget was not intended to be used for horse riding or gym sessions.

With Sarah unable to use her Personal Budget to improve her wellbeing in the way that was right for her, she was stuck at home, unable to be active in her community. This had a negative impact on her. She became depressed, unable to engage and lost confidence, which consequently affected her language development and learning.

Her mum, Susan, sought advice from Disability Rights UK. Following our advice and literature, Susan has taken up her issue with a senior person in the adult social services department at Haringey Council. The Council acknowledged their fault and admitted Sarah was provided with the wrong information. They confirmed that Personal Budgets can be use for anything that constituted an activity as well as any activity that enhances Sarah’s independence and wellbeing.

Sarah’s case is now resolved and she is happy again. Her confidence and stimulus has once again been boosted through her enjoyment in horse riding and gym sessions. She is no longer stuck at home and depressed and she is enjoying more independence. Susan thanks us for our valuable advice and help, saying:

“My daughter now has a good quality of life as she is doing the activities she always wanted to do.”

The Disability Rights UK Personal Budgets Helpline telephone and email service (formerly the Self Directed Support Line) is an advice service that is open for individuals and organisations to receive information on Personal Budgets as part of the personalisation agenda.

Telephone: 0300 555 1525 or email personalbudgets@disabilityrightsuk.org. Opening hours: 9.30am -1.30pm on Tuesdays and Thursdays.

Find out more about getting active using personal budgets.

It’s just about finding what works for you.

Tuesday 21 February 2017

In October 2016, Get Yourself Active invited Paralympic Torchbearer Laura Turner to write a personal experience blog for us about how ‘Non-disabled people can learn from us‘. Since then Laura has taken up a new activity – para-cycling! Read what she’s been up to below!

By Laura Turner

I was born with congenital coloboma, micropthalmia and nystagmus in both eyes. I trained with my first guide dog, Hester in 2013 and just like me she likes to get out and get active!

As a youngster I wasn’t allowed to take part in PE lessons or after school sport activity because of ‘health and safety’.

In June 2016 I stumbled across a news feed on the British Blind Sport website on behalf of British Cycling. Entitled Track2Tokyo I opened the link to read that they would be launching a Talent ID programme following Rio to help find the next generation of GB para-cyclists.

At the time I was looking to get back into sport so my immediate reaction was ‘WOW, now that sounds exciting’! But my immediate concerns were that I have no real experience of cycling and would my age go against me? Keen to find out some answers I emailed British Cycling Para-Cycling team, to which their response was positive. The next day I submitted my application to be considered.

The next step was to find the love for a bike! As it can be more difficult for a visually impaired person to get out, I decided that the only way I could achieve this whilst getting fit, was to go along to regular spin classes at my gym.

In August 2016 I went along to my very first para-cycling track session at Derby Arena, where I met my pilot, Emily, an experienced cyclist and student at Loughborough University. Straight away we clicked and I felt so confident, which is so important when riding a tandem.

Encouraged by British Cycling coaches, in September I then went along to my first Disability Hub session. These sessions are supported by Sport England and were introduced to allow those with disabilities to enjoy cycling outdoors in a safe environment, whether that be for leisure or for those who want to compete in road races.

Was it worth it? Yes, absolutely! At the first Track2Tokyo track day back in November one thing the coaches encouraged us to do was to enter the HSBC British National Track Championships. Yes, it did cross my mind that I had only been cycling for 3 months with very little track experience but, I have competed previously in other sports, I had a confident and experienced pilot and in my mind this is what I wanted to do. There’s a first for everything and we all have to start somewhere!

The National Championships were incredible! It was great to see the para-cycling events amongst other events, giving spectators the opportunity to understand and appreciate disability in sport. Everyone was so supportive and encouraging, which as a disabled person makes you feel really included, allowing you to forget your disability and put all your focus on your ability to cycle at speed round a track!

Our aim was to enjoy the experience and do our best. We did and came away with not 1, not 2 but 3 PBs! Onward and upward…

Taking part in any sport is not just about keeping fit or standing on the podium, it is great for your mental wellbeing too. Just 1 hour in the gym or attendance at a fitness class each week could get you meeting so many people.

For me personally, it’s a focus, a goal, an achievement and, when road cycling, an opportunity to clear my head whilst improving my endurance.

Any tips I would recommend? Don’t knock a bike or a tandem until you’ve tried it! Cycling really is so much fun. I couldn’t think of any better way to keep fit and socialise at the same time! All the coaches are so supportive and treat everyone as individuals. Same for spin classes. Yes it’s tough but, don’t give up! It’s just about finding what works for you. The bike won’t go anywhere and it doesn’t matter if at first you aren’t as quick as everyone else. In time you will be!

Follow Laura on social media:

Twitter: @TandemTurner

Facebook Page: LauraTurnerParaCycling

Read Laura’s first blog ‘Non-disabled people can learn from us‘.

“Sport really is a way to bring people together”

Friday 3 February 2017

By Gary Hatt

Hi there, I’m Gary. I was born totally blind but am now partially sighted after a number of operations.

I’m currently into exercise classes and do Krav Maga (a type of self-defence) and I love doing both. However, it wasn’t always this way.

My first introduction to sport was at the Visually Impaired school I went to, playing football against other partially sighted players. As I grew up I wanted to play tennis but was pushed into the Visually Impaired group. I really didn’t like this as I wanted to be involved with all kinds of people.

I feel I’ve been segregated all through my life – even put into sheltered employment. This has made me feel as if I always have a label and am put into a box – but people aren’t that simple! In society people don’t engage with me, but with sport I get to mix with non-disabled people in a fun way.

Like anyone who’s trying to find a new activity that’s right for them, there was a lot of trial and error. Since moving to Norwich from London I’ve tried yoga, but frustratingly it didn’t work for me. I found it difficult to follow. I was always behind the fully sighted people in the class and really needed one-to-one tuition to follow the movements.

However, since starting Krav Maga I have been actively encouraged by the instructor and club members I fight with. They help me if I’m doing something wrong. I just turned up one day to the induction class, and joined the club. Since joining I have achieved a P1 in Krav Maga and I hope to do my P2 later this year. This will be more difficult but I’m determined to do it!

I also do an exercise class, with fully sighted people. This involves mat exercises and using hand held weights to do exercise. The members are helpful and the instructor is great! I also do an exercise class to music from a chair, or standing behind one! It’s great fun and we all have a laugh.

In addition to these two great activities, I play indoor Tennis and take part in Streetsmart – a self-defence class run by an instructor. Both are great fun and run by the Norfolk & Norwich Association for the Blind. What’s even more unbelievable is I also do off road driving at Elvedon! It takes place with instructors in a 4×4 vehicle and is so much fun. It’s brilliant for me as a visually impaired person to experience this as I’ve never driven!

If I didn’t do all this and engage with sport, I’d become isolated and this would lead to all sorts of health problems and make me feel depressed.

I can’t stress that it’s about having the confidence to do this! For some people, doing sport with other disabled people is great, but for others like me, it’s not always about being in the ‘visually impaired sport’ category. It’s about being equal and doing activities with non-disabled people. I really believe this makes everyone more accepting of disability and promotes us as the same. Our disability shouldn’t make us different. We just need a chance to express ourselves.

My advice is get out there! Put yourself into a club, speak to the instructor and the other members, explain how things should be adapted and what you need to take part. This is a great way for everyone to learn.

I find myself saying “I can do this”, if I’m given the opportunity.

There is so much non-integration in society, and sport really is a way to change this and to bring people together. Hopefully this will translate to other areas of society and can break down negative ideas about disability.

Have you got a story to share and inspire others to get active? For more information on how you can be featured on our personal experiences page Contact kirsty.mulvey@disabilityrightsuk.org

For information on how you can get active in your local area click here.

 

Personal Budget: a personal adventure.

By Graham Tucker

One day I woke up and started a whole new phase in my life. I was a newly divorced sixty something overweight guy who happened to have a visual impairment and a list of medical ailments as long as your arm. There I was now living alone, somewhat socially isolated and pigeon holed as a “vulnerable person” in need of help.

There were many hoops to jump through with social services and it seemed like a circus; the assessment process was a nightmare. I was told that Tesco did some very nice microwave dinners – not what I wanted to hear given my desire to eat more healthily and lose some weight. In the end I was given a massive four hours a week support, which I eventually got increased to six hours a week.

I discovered by chance the Personal Budget scheme. Back in the circus ring, with more hoops to jump through, I eventually I gained control over how I used my six hours a week. So, with help, I employed a Personal Assistant (PA) and became an employer. It sounds – and was – challenging, but the finances and payroll were looked after by a charity who took all the worry out of it. All I do is complete a time sheet for my PA every four weeks. My local authority pays my direct payments to the payroll company and I, with more help, arrange the all-important public liability insurance.

The downside is that six hours a week was never going to be enough. I joined a gym through a local scheme called Fresh Start which involved a referral from my GP. It was a 12 week course targeted at my needs and ability. Best of all it was free! The downside was it used nearly 50% of my PA time, but it was beneficial. I decided to invest the money I would spend on a gym membership on my own cross trainer which now sits in my living room and is used most days

Having a PA enables me to make better choices. She helps prepare fresh vegetables, meals and acts as my eyes when shopping, constantly checking those “traffic light” indicators on the food labels. I have a great PA however before I got her, over a year ago there were several bad experiences with others. Six hours a week is nowhere near long enough but it has led me on to better things.

First day at DRUK Get yourself active as a volunteer

By Iyiola Olafimiyan

iyiolaGetting active either through sport, gyming (going to the gym :)), drawing or volunteering is something I cherish as a disabled person, so when I contacted Leanne last year about volunteering on her project I was glad she said…..yes!

So I came in on my first day anticipating that I will be well received by the folks at DRUK and get inducted into the project. You guessed right, Leanne and the rest of the team received me well and made me feel like part of the family. One great thing I am going to love about volunteering here is coffee – yes, coffee -there is good coffee here and it is free – something to look forward to every Friday then, bye bye instant coffee (every Friday treat)

I am settling down, going through policies and documents and basically getting used to the environment. I think I am going to like it here. I will not be doing a second day or third day sequel however I will occasionally update you and share my experience getting active.

Iyiola will be posting news items and tweeting from @GetYrselfActive so please follow us and check our new pages for the latest updates

Why I Run

By Andrew Smith

yh-2016-14Why I run is a question I’m often asked and a question I ask other runners too. I find it fascinating and intriguing to discover the many and sometimes complex reasons why people run. In today’s increasingly time consuming and fast moving society, why anyone would want to run with an already crowded social and work calendar when it is easier to get home, switch on the television and watch others running round a track, can be hard to comprehend.

I can only speak for myself why I run but like many others my reasons are various, complex and intertwined. What I get from running mentally and emotionally has changed too as my journey has continued and may even change again.

The best place for me to start is with some background information on my life and my running journey. This is my story of why I run.

qrc-wywl-dewsbury-13Growing up I was never sporty. I played football, rugby, cricket and ran round a field at school, but I was always the runt of the class, one of the last to be picked and usually the last to finish. Through my teens, twenties and thirties I would play 5-a-side with work colleagues, but that was it as far as sport and running was concerned. Running was not for me. Into my forties and I stopped playing 5-a-side and the weight piled on. I soon went from around 14st when I turned forty to 19st 10lbs aged 45. I didn’t think anything of it. I was getting older and getting fatter was part of the process. Everybody went through the same thing and I was no different. This was life as I knew it.

But before all the weight piled on I had been diagnosed with depression in April 2001. For months before this I hadn’t been feeling well mentally, emotionally or physically. I was tired and disinterested in many things. The only respite I had was drinking with my mates at the weekends. Long term this didn’t solve anything but you don’t think long term when you get that short term fix of drinking yourself into oblivion so you can forget everything that you perceive as bad about your life. Your problems seemed solved because you can’t remember them. Until you come round the next day to realise that they’re still there, they haven’t gone away and all you can think about is the next weekend and going through the same routine.

pv-2016-2

So off to the doctors I went, and with his usual abrupt manner he told me I had depression. He put me on anti-depressants to help lift my mood so I could ‘man up’, get a grip and carry on with life as if nothing was wrong.

Except it was. The anti-depressants are, in my opinion, like state sanctioned alcohol tablets. They mask the problems causing you to be depressed because they make you drowsy, dull your senses and you are not fully aware of what is going on around you. This is my own opinion and others will have a different experience depending on what tablets they were prescribed and the dosage. I ended up on 40mg of Citalopram a day which made life bearable and forgettable. I tried Prozac for a while but not being able to stop inside because all four walls were closing in on you is not a good experience.

The depression, stress and anxiety continued to get worse as my problems mounted, despite the anti-depressants . I was reluctant to ask my doctor for an increase in dosage because I was already on 40mg a day and was having problems functioning fully day-to-day. I was also fearful of becoming addicted to them and then asking for higher and higher dosages to ensure that I got the same hit.

So during the mid 2000’s I found myself dependent on anti-depressants to get through the day. Stress and anxiety levels were increasing all the time, as were problems with alcohol and money, and I was in a job I hated. I could see no way out. I didn’t know who to turn to or where to go. This is the loneliest place to be. I decided that the only way to solve everything would be to take my own life. I mean who would miss a loser like me? So I made my first suicide attempt sometime in 2005. I attempted to overdose on tablets. I remember falling asleep and waking up the next morning drowsy – but alive. That morning I phoned in sick to work but was in work the following day as if nothing had happened. I told no one about this. What could anyone do to help me?

The Samaritans is a charity available 24 hours a day offering a free confidential listening service to anyone in distress. Call 116 123 or email jo@samaritans.org.

But life carries on regardless. I was alive and I had no choice but to regather my thoughts and get on with life. So I did.

Things got more and more intense and overwhelming for me though. I was in a desperate cycle of depression, anxiety and stress with no way out. This carried on for years and during the latter part of this period of my life I was somehow surviving on one hour of sleep a night and constantly have suicidal thoughts all through the day. This was not good for me or anyone around me and is not the way to live your life. Something needed to change.

st-2016-5And change it did. For many years, I had felt different and slightly out of touch with the rest of society. I didn’t know why, I couldn’t put my finger on anything and no one around me seemed to know either. And then my best friend Jill suggested I may have Asperger’s Syndrome, a high functioning form of autism. I did some research into Asperger’s and for the first time ever I could identify personality traits in myself with the characteristics of Asperger’s. It was like a light switch coming on in my head. I began to understand myself in a different way and look at society and life in a different way too.

What is Asperger syndrome?

However, this was only the start of a very long and tortuous journey through the minefield of getting a diagnosis which I eventually got in October 2008 after 18 months of battling a system that was seemingly more interested in money than the wellbeing of the patients it was supposed to be serving. I didn’t give in though and I got the diagnosis I felt I needed to move on with my life.

And move on I did. In 2009 I returned to college and got my O and A Levels. This enabled me to study for a degree in sociology at the University of Huddersfield. I began writing and performing poetry which fulfilled a need I had in me to be creative and express myself. But there was still something missing and this is when I discovered running.

I was chronically overweight and unfit due to an unhealthy diet and drinking too much alcohol. I had tried going to the gym but didn’t stick at it. Lifting weights in a room just wasn’t doing it for me and I got bored easily. Then on one of the Queensbury Facebook pages I saw an advertisement for people who wanted to start running to join a new beginners group at Queensbury Running Club. The guy who was running it was someone I had worked with many years before so I decided to give it a go.

wsfr-2016-4That first session was hard but I enjoyed it. It was a nice pace with some walking in between. I coped with it and didn’t feel it was beyond me. This was around April 2014 and I carried on going all through the summer. Then autumn came; it got colder, wet and windy and I didn’t want to go out running anymore. Without realising it I had become a fair weather runner.

Over the autumn and winter of 2014 I stayed in and didn’t do any running. The weight stayed on and I was still searching for that missing something that would give my life more meaning and plug a hole in it.

March 2015 came round and I went to London for a professional voice acting recording. I was told I have a very good voice for recording but found it difficult to breath correctly due to weighing so much. I knew I needed to change if I was to make anything of my voice and so I went back to the running club at the first opportunity.

I soon got back into running, even more so than before. The club had expanded since my last visit and a lot more people had joined but after a couple of weeks it was as if I’d never been away. I was struggling, especially with getting my breathing right, but I was enjoying it and looked forward to running every Thursday night with the Queensbury Running Club gang.

I started slowly. From memory my first parkrun at Lister Park, Bradford was around 45 minutes and most of that was walking. I went to Shroggs Park, Halifax and I ran 40 minutes. I had knocked 5 minutes off my time but I was still walking part of the course. This was my next aim, to be able to run a full 5k with no stopping for hills or else I felt tired. I was determined that nothing would stop me achieving this target.

This was a major breakthrough for me. Rather than giving in and telling myself I couldn’t do it I told myself I could do it. And I did it. One summers day I laced up my running shoes and ran down one of the local roads. This was a good tactic as it allowed me to warm up without the added pressure of running uphill and get my legs ready for the long journey ahead of them.

I went down the hill and felt good. This is a nice road and at about a mile long is perfect for a warm up. Right up a small hill before down again. Before I knew it I had run 2 miles non-stop for the first time and I was running into uncharted territory. Would I manage 3 miles or would I collapse in a heap waiting for some dog walker to come by and rescue me?

I needn’t have worried. I carried on and on and on. All of a sudden I was running very slowly uphill but I was still moving and I passed the magical 3 mile mark according to my watch. I was so happy. I had achieved my running dream and run 3 miles without stopping. I felt like a Olympic superstar.

And from that point on running became fun as well as a way of losing weight and getting fit. I started running 3 miles and more on a regular basis and hills that had previously defeated me I conquered. It wasn’t easy and I would never pretend it was but the sense of achievement I felt was like nothing I had experienced before. I proved to myself I could do something, that it was not beyond me and most of all I enjoyed the experience.

And this continued. I entered races which, whilst I knew I had no chance of winning, I derived pleasure from by pushing myself to my limits and beyond. I found that I was capable of far more than I thought I was. I could do things I never believed I could and I discovered a new me, a better me that had more self-belief, more ability and more confidence.

kirkwood-hospice-10k-2016

This has gone over into other areas of my life. I now have more confidence in everyday life and I have learnt to be more patient. Running is a good analogy of life. It’s hard work, the results don’t come quickly but if you stick with it and persevere you do see an improvement in your physical, emotional and mental wellbeing.

And now over two years since I started running I’ve been to places I would never have been otherwise. I’ve met people I would never have met and had some of the most amazing experiences all through running. My mental, emotional, and physical health has improved immensely. I’m eating better, sleeping better, and living life to the full and I’ve got running to thank for it.

To keep up to date with Andy’s running or to read his blog in more detail visit his website. You can follow Andy on Twitter@andyqby28.

For information and support on mental health problems visit www.mind.org or contact your local GP.

The Samaritans is a charity available 24 hours a day offering a free confidential listening service to anyone in distress.  Call 116 123 or email jo@samaritans.org.

From Boccia to Ice Skating – It’s important to find the right activity for you!

great-eastern-run-1Jonathon’s story is told to us by his Personal Assistant, Mandy, who explains the different activities Jonathon takes part in, and his thirst to try new physical activities.

Jonathon was born on the 6th of August 1991, weighing a mere 5lb 11oz, and resulting in him being in special care for about three weeks. When Jonathon was around six months’ old he suffered a massive fit, which is where a bomb shell was dropped on the family and they were told Jonathon had cerebral palsy.

rebound-therapy

Jonathon’s family came together to raise money for him to go to the Peto Institute in Hungary, which teaches children who have cerebral palsy and cannot control their bodies very well to lead more independent lives. It was here that Jonathon had physio, enabling him to sit up and do other activities.

Jonathon went to a mainstream primary school and secondary where he had hydrotherapy. When schooling ended he went to college, but when that finished Jonathon became bored very quickly. It was then that I started to find sports activities for him to try.

hand-cyclingIn October 2014 I found a group that taught boccia. Even though Jonathon could not throw, he used a ramp to do what was needed. It was at boccia that someone suggested that Jonathon should try hand cycling, so in January 2015 we went to our local athletics track to see how he would get on. Although he needed a little assistance at first, he soon got into the swing of things and when it started to warm up he got quicker and quicker. At one point he did 10 laps of a 400m track!

ice-skating

Meanwhile, instead of doing just boccia on Monday nights, we started doing multi-sports. This included boccia, floor exercises, archery, rounders and many other activities. We were then invited to an inclusive ice skating session where Jonathon got to go on the ice. He really enjoyed it, especially when professionals took him round – they were a lot quicker than me!

We are now in 2016 and Jonathon is doing multi-sports on Mondays, hand cycling on Wednesdays and ice skating on Fridays. I did not think we could find anything else for Jonathon to do, but April saw the start of Sailability. This offered local disabled people the chance “to go sailing, to enjoy the fresh air and sense of freedom that this brings”.  So, on a Tuesday we would take Jonathon to a local lake where he would go and enjoy sailing (the stronger the wind the better). In June sailabilityof this year Sailability set up a Water Wheels Challenge. This meant Jonathon could sail a short course on a sailing boat on the lake, then go on to an adapted cycle, and cycle a small route before crossing the finish line. Jonathon has done this twice now and he loved it!

Whilst participating in the Water Wheels Challenge, they had other activities for people to try. This is where proper archery, as well as rebound therapy, were suggested to us.

archery-2Doing physical activity keeps Jonathon mobile, preventing him from becoming stiff and unable to do things. Jonathon now has a different activity to take part in each and every day: Monday is multi-sports; Tuesday is Sailability;  Wednesday is hand cycling; Thursday is rebound therapy; and Friday is archery and ice skating.

As for me, I am definitely feeling active but I feel more tired than he does.

 

swimming-for-charity

On the 27th of November Jonathon and I completed a sponsored swim to raise money for Inspire Peterborough. We raised about £80 and the swim went brilliantly. I swam 86 lengths and Jonathon managed an amazing 24 lengths!

To read more about Jonathon, visit his Inspire Athlete profile page on the Inspire Peterborough website.

Want to find out what is available in your area? Take a look at Information in Your Local Area pages on this website.  

Want to know more about Personal Health Budgets and getting active? Take a look at our GYA resource Using Personal Budgets and Personal Health Budgets to Get Active.

Non-disabled people can learn from us!

 

Laura on a bike 2Just a bit about me to start with; I live in Warwickshire, I am visually impaired and I just taken up para-cycling…which I am loving!

I am one of four children and growing up I was treated no differently.

In primary and junior school I didn’t take part in P.E or after-school
activities due to my visual impairment. And when I was encouraged, it was always very difficult.

My non-involvement in physical activity wasn’t a personal choice, but pure lack of understanding amongst teachers.
It was only when I started secondary school that the world of disability sport was introduced to me. I will always remember saying ‘I
want to have a go at that’!!Laura abseiling
I quickly got involved in many different sports, after-school and additional training sessions. Since the age of 12 sport has ruled my life!!
Getting yourself active doesn’t just mean ‘get fit’. Yes it is good for your physical health, but also your mental wellbeing and for socialising, which I feel is really key for those with a disability.

It is all important for disabled people to engage with and encourage non-disabled groups/organisations to be inspired, get involved and learn from us, the experts.

Laura competing in dressage

Not every disabled person is a Paralympian but we all have a golden
opportunity to get active, learn something new and discover hidden talents.

For years I competed in dressage, but in 2014 I sadly lost my very special horse to ill health. It’s taken me 2 years to find a new sport. I didn’t realise just how much being active really meant to me, the boost it gives you and what a journey it has and can be.

 

Want to find out what is available in your area? Take a look at Information in Your Local Area pages on this website.

You can also follow Laura @TandemTurner to keep in touch with what she is getting up to.

 

Swimming Lake Coniston with No Feet: a one-off personal challenge

By Ikeni Mbako-Allison

ikeni-mbako-allisonI was caught in a house fire and suffered burns to my lower legs at 11 months old. I underwent double below-knee amputation at the age of 12 and have suffered recurrent problems with prosthetics. I have consistently found it more difficult than peers to engage with sport. I played a bit of basketball at school where they kindly adjusted the rules in gym class so that I could play in a wheelchair. This was a mildly amusing though ultimately ineffective enterprise: my classmates were understandably fearful of a huge metal object hurtling towards them at speed on the court… Basketball is ordinarily non-contact!

As a child I had been a keen swimmer but because of weight gained as a result of the amputation and self-consciousness this stopped. Although on mobilising with prosthetics and lost the weight, I didn’t really engage in sport. The fact that most sports are, by design, exclusionary was at once disheartening and profoundly unattractive. When people ask if I support a football team I still comment that “I don’t have any feet”. Being a spectator is clearly different from participating but I think it makes a neat point. I started swimming again during my masters at Oxford as a way of managing stress and increasing my sense of wellbeing. Being fit and feeling comfortable in my own skin has a significant impact on my confidence and self-esteem not least because of the stigma around disability.

I have never been physically competitive. However, at a certain age in your late twenties all of one’s friends start running marathons or walking extraordinary distances for charity. Eager not to be left out of this strange but laudable seeming social convention I resolved to find something similar that somebody without feet could do. Cue Arena Chillswim, a yearly event in which a bunch of otherwise sane people hurl themselves into lake Coniston on a summers morning (the saner, including me, in wetsuits) and attempt to swim the full length of the beast (5.25 miles). I decided I was daft enough to attempt this about a year before the next organised swim. Little changed in my swimming routine for the first six months. As before, I tended to get into the pool and swim as many lengths as I could before I got too bored or too tired to continue. When I eventually started to calculate the distances I was swimming, to my dismay, I found that I was absolutely exhausted and bored stupid doing only a quarter of the distance.

In May 2016 prior to the swim I decided that it was time I did half the distance. I was becoming increasingly concerned that I might fail – not a prospect I relished having proudly announced to everybody that I was going to be “swimming Coniston in September”! The pool I had been using was only 20m long and I needed to emulate a lake as best I could: there are no lengths to count in a lake and you don’t have the turnaround at either end which allows you to push off or to breathe more – depending on how you do it. I did a search and found Tooting Bec Lido, a 91.5m unheated outdoor pool in South London which I recommend to any disabled person thinking about taking up swimming. It is free on proof of disability and, I am told, is the second longest pool in Europe. One Saturday morning I put my swimming trunks on and got in. Having been preoccupied with the distance involved in my final swim I had neglected to consider the cold. It was freezing and on finishing I shivered for a good 45 minutes before having the good sense to go home and order a wetsuit.

I soon decided that a close-to full length swim was in order. This resulted in terror: my breathing turned into pained gasping and almost squealing during the last 20 or so lengths. With little time left I set up Just Giving page and resolved to go to Coniston to test the lake. The next weekend I put a tent in my car and off I went. This was a mistake! The lake was freezing, murky, and disorientating, and I had no idea what distances I was swimming. I spent most of my time doing breast stroke because I couldn’t see further than 10cm under the water. I would put my head down and attempt a few strokes only to find that when I re-surfaced I was swimming in the opposite direction. I returned to London less confident than ever and started swimming in excess of the full distance so as to accommodate zig-zagging and the other difficulties I now anticipated. I began to alter my stroke to include lifting my head at frequent intervals so that I wouldn’t find myself swimming backwards on the day. I have subsequently discovered that the professional term for this is “spotting”.

I suffered rotator cuff injuries to both shoulders a week before the event because, fueled by panic, I had swum three full length swims in 2 weeks and “spotting” was putting additional strain on my shoulders. The realisation that without feet and with arms that were now less than functional I may end up rolling around in the water like a sausage in front of hundreds of people suddenly dawned on me! Having taken money from friends, family and others I decided that there was little choice but to cover myself in deep heat regularly, turn up on the day, and try my best.

ikeniOn the day, as if to taunt me, a Chillswim bus drove me down the length of the western side of the water to the start. To make matters worse it was full of athletic men and woman proudly proclaiming that this was their 100th open water swim and asking each other which of the “other swims” they had done (I exaggerate the number but you get the point). Most people changed before getting on the bus but on account of having to remove my prosthetics at the water’s edge I had requested permission to put my wet-suit on just before setting off. The organisers were very accommodating and arranged for my blades to be transported to the finish. Due to my ever increasing lack of confidence, I asked to be put in a slower batch of swimmers: swimmers leave in groups based on speed with slower groups leaving first so that the safety kayaks are not overstretched. I drastically underestimated my ability and had to be slowed down over the first three quarters of the swim. There were “feed stations” along the way: boats from which willing volunteers threw jelly babies every now and again, presumably to keep me going and not, as was the effect, to make me feel like a performing seal. These provided welcome interludes to what was an exhausting but thoroughly enjoyable challenge in beautiful surroundings. Finishing was both exhilarating and a profound relief.

Swimming is not for everyone, but I whole-heartedly recommend engaging with a physical personal challenge. Like so many, I have learnt that the best way to overcome the exclusion that society presents is to seek out the things that I can do. Through lack of foresight, historical accident, and a deficit of willing, the world is often not as accommodating as it could be and sport is no exception. However, with creative thinking there are ways for disabled people to overcome barriers to physical recreation. I was a confident swimmer anyway and was not even at much of a disadvantage owing to the fact that over long distances arms are apparently more energy efficient than legs. I didn’t know this when I decided to take part but it illustrates the circumstantial and social nature of the barriers that exclude disabled people. Usually these are intensely frustrating but rarely, by accident, there are less barriers than you think and you may not realise until you try.

Ikeni swam 5.25 miles across Lake Coniston on 3rd October and raised an amazing £1,823 for Disability Rights UK – for more info his Just Giving page is still live.

It is the taking part that counts

By Jenny McLoughlin

olivia-breen-jenny-mcloughlin-katrina-hart-and-bethany-woodward-celebrate-bronze-image-1-686337088How do disabled people become more active? I still cannot believe that in the 21st century people are still asking questions about how disabled people can become more active and be involved in sport? Surely we have come to a point in time where there should be an automatic gateway to be involved in sport and for there not to be a barrier for people being able to access sport. Just under four years ago London hosted the biggest Paralympic Games there has ever been, which showcased to the world, disabled athletes participating in the highest level of sport, I should know I competed at these iconic Games.

Parallel_Logo_MainThe London Paralympic Games showcased disabled sport at its pinnacle. To inspire the next generation was paramount of the legacy of the Games. So why is it to this day there is only 17.8% of disabled people partake in sport compared to 39.2% of their non-disabled counterparts? Through this blog I will share some of my own experiences of being an elite disabled athlete, discuss the barriers that arise with disabled access to having an active lifestyle, and what more needs to be done in allowing everyone to be involved in sport.

By writing this blog I had a numerous of questions I asked myself about sport. The two main questions are; what does sport mean to me and why did I choose to get involved? The word that jumps out to me about what sport means to me is ‘inclusion’. Sport by nature is inclusive, it is for all no matter the ability. Everyone can take part in sport if they wish to do so. That is what is so fantastic about the event I am working on called Parallel London. Parallel London is hosting the world’s first inclusive fun push/run happening the Olympic Park on the 4th September. It is meant for everyone not just for the disabled community, nor is it an event for non-disabled people. It is a day where every person or group in society can come together and take part in a bit of sporting history. It is not an event necessarily to gain PB’s, it is an event for everyone to partake in regardless of ability. That is also the main message of the Olympic and Paralympic Games – it is the taking part that counts which is so true of the vision of Parallel London.

IPC+Athletics+World+Championships+Day+Eight+g15gZQCPwxblEnjoyment is the basis of where I started my sporting career over ten years ago, and why I chose to get involved in athletics. From an early age I loved all sports it gave me confidence and the ability to do something I loved. Aged fourteen I joined a local running club with a mixture of non-disabled and disabled athletes. I never wanted to be typecast as a disabled person trying to have a go at sport, I was an athlete like everyone else in my training group. I couldn’t run as fast as some others – I came last in most races! But I was still able to run within my own ability and the people around me embraced that. At the end of the day I was an athlete like everyone else.

I am fully aware that disabled people find it more difficult to have an active lifestyle due the physical and psychological barriers we may face. Thankfully, there is much more in place now so that disabled people can have an active lifestyle. There are numerous sports clubs that cater for specific sports including wheelchair Basketball and wheelchair Rugby. Nowadays, most leisure facilities and schools will have a contact to inform you how to access sport or they have disabled sports clubs themselves. There are also national organisations which focus on disabled sport across a range of sports that people can do. Of course, more needs to be done for people being aware and becoming involved in sport. Having major national events like Parallel London will only enhance this and help drive participation of disabled people being involved in sport.

Sport gives you a determination and ‘a can do’ attitude, and I believe that needs to be reinforced especially among the disabled community. For people with disabilities a reason they may not partake in sport is they believe they are not good enough. We want to help to change that feeling which is why inclusion in sport is key. Events such as Parallel London and projects like Get Yourself Active will enhance the belief that every person is good enough to take part, and physical activity and sport is for everyone.

AHR_7304From my own experience in athletics, sport gives you so much more than just being active, it instills confidence, self-worth and the health benefits that come from sport. Whether it is a team sport like football or an individual sport like athletics,
you are essentially part of community in which you make friends and be encouraged by team mates. Sport allows friendships to form and I myself have made lifelong friends through my sporting career.

Throughout this blog, the key message I have tried to bring out is there must be inclusion in sport. Inclusion is what will bring everyone together to participate in sport. I believe there is no reason that the 17.8% disabled people that currently participate in sport should not be equivalent to 39.2% of their non-disabled counterparts. Events such as Parallel London will only help to raise this figure and give disabled people a pathway to be involved and achieve in sport. A final note, one of the key ideas that came out of the Paralympic Games is that spectators saw an ability instead of a disability in the athletes competing. That message is still true today and needs to be conveyed to a wider audience. That is why on the 4th September I will be lining up at the start line at the Olympic park.

If you would like to come and cheer on participants in the bug run/push, visit the info page on Parallel London’s website.

We have some Disability Rights UK runners taking part on the day – PLEASE SPONSOR US if you can.

You can follow Jenny on twitter @JennyMcL21 and you can leave a comment about Jenny’s blog below!

A session or class at the pool is an integral and highly valued part of the week for many

By Karen Oldale

Copy_of_St_George's_023You only have to see the smiles and to hear the conversations at St George’s community hydrotherapy pool in Peterborough to know that ‘getting active’ in the pool is improving the wellbeing of disabled people.

In a far-sighted move, Peterborough City Council opened the former school pool to the community some years ago. 250 disabled residents exercise there every week. The warm supportive water and relaxed friendly atmosphere allows everyone to enjoy physical activity. A session or class at the pool is an integral and highly valued part of the week for many. Some use their personal budgets to do this.

Of course, not everyone is able to visit the hydrotherapy pool to see and hear how it enriches lives. Conscious of the need for evidence, cuts to local spending and with an ageing pool we, as hydrotherapy users, decided to try to capture some of the outcomes that we experienced. We also wanted to give those using the pool an opportunity for their voice to be heard.

Working collaboratively with friends in health and care we designed a survey that was offered to everyone accessing the pool over the course of a week. The answers and testimonies were organized according to the outcomes experienced to create a report.

The results and the story that they told were powerful. The positive effects of using the pool included improved physical and mental wellbeing, independence and connections to the community. But as you will see, there were many more…

We hope that you will be interested and encouraged by our experiences of Getting Active.

Read the St George’s Copmmunity Hydropool Report and infographic.

A little bit about me

20160624_132600We know that physical activity is good for us but if you have a disability or health condition, finding something that you can do and enjoy can be harder. It certainly was for me…

It was only in the warm supportive water of the hydrotherapy pool that I finally discovered a way to be more physically active and have fun. It was quite literally – such a relief!

By exercising in a warm pool, I found a way not only to maintain my strength but also to manage my pain. This was important. I learned that being able to be free and active in the water, in a way that I could not on land and without causing pain, was energizing, relaxing and pleasant. Even if I was tired after a session, it was a good tired. I felt just so much better. Regular pool sessions enabled me to keep my medication and GP appointments to a bare minimum, and to postpone surgery. My energy and confidence increased; I was in control. Life was enjoyable.

I wondered if other people might benefit similarly; surely I was not alone. I wanted everyone to have the same opportunity and experience.  Fortunately, others in Peterborough listened and agreed and the rest is history…  St George’s pool opened to the community in 2011. Now 250 disabled people choose to use the pool every week and as their testimonies in the report shows, I was certainly not alone…

You can visit the St George’s Community Hydrotherapy Pool Website to find out more or follow them on twitter @Pborohydropool

All I’m doing, by employing a PA, is cutting out a very expensive middleman

By Glen

Glen - blogAfter waiting for just under one year, I finally received my personal health budget (PHB). Since the introduction of the Care Act allowing every service user to have their own PHB is a great leap for people with disabilities to become more independent and have control over their life. After many years of battling with social services trying to prove to them that I needed a live-in carer to support my needs because of my long-term health condition I eventually ended up in hospital with pneumonia.

I spent 9 weeks in hospital because of underlying health conditions due to my long-term health condition. I received a continuing healthcare package and when I came out of hospital last February I was looking forward to finally taking control of my own care. However, due to the ‘newness’ of the Clinical Commissioning Group personal health budgets there was a long process of ensuring that my needs would be met. Part of this process involved producing a ‘support plan’ of how my assessed needs, outcomes and how I want to use my personal budget to achieve these outcomes.

After leaving hospital, my care was placed with an agency and understandably their costs were quite high with their overheads such as administration staff wages and paying their carers the minimum wage. This means the whole of my PHB goes entirely to the agency, leaving me no money from my budget to pay for any extras such as respite breaks and alternative therapies.

I was happy when my support plan was approved and my PHB was transferred over to me allowing me to customise my care. However, I have since found out that if I want to employ my own Personal Assistants (PAs), which will obviously be better for me, the PA (increased wages) and value for money for the NHS, I will have to have my support plan reviewed. Which already took almost a year.

The reason behind this I have been told, is that they want to make sure that employing my own PAs, my needs will be met. Of course they will be met! There is no difference with employing PAs from an agency to me employing my own PAs. All I’m doing is cutting out a very expensive middleman such as the agency and any unspent budget will be returned to the NHS.

The only reason I can see behind reviewing my support plan is to reduce my PHB so they can adjust it just to the PAs wages. Which defeats the purpose of having a PHB and to be able to pursue activities that will benefit my well-being and independence.

Glen volunteers for a number of organisations but mainly as a social housing landlord. He is chair of their Residents’ Council and represents 28,000 homes across London and south-east region scrutinising the services provided to the residents. He also volunteers for Muscular Dystrophy UK as an MD ambassador helping families who have had a member of their family recently diagnosed with MD. He is currently studying Law and Psychology with the Open University.

You can find out more about empoying personal assistants by reading the Disability Right UK fact sheet Being in Control: Getting Personal Assisstants.

Want to know more about Personal Health Budgets and getting active? Take a look at our GYA resource Using Personal Budgets and Personal Health Budgets to Get Active.

Cycling back to being me

By Caroline Waugh

At the age of 21, I was a caring young woman, and full of the joys of life. I was extremely physically fit, and worked full time as a Carer, in a psychiatric hospital. I loved my job, never had any time off sick, it was fab. In June 1988, I got German measles. What a ‘Pain’ that was!!!! I was ordered to not work, and to stay in isolation for a week. I had 5 days off, I’d had enough I was ok.

My shift that day was 7-3. When I drove home in my new car, (it was new to me!!) a Sahara Beige Mark 2 Escort 🙂 I had only passed my driving test 6 weeks previously!! No one knows what happened that day, some people say I fainted at the wheel?? Who knows I certainly don’t. I crossed over the road, and hit a double decker bus, 3 cars and a parking metre. Searing the top of my brain off, cracking umpteen ribs, puncturing my lungs. And the most life threatening, rupturing my Spleen which gave me a massive internal bleed. Some medics, have said I died???? But I don’t think so????

Chemo-session

The next 6 months I was hospitalised, moving from Intensive Care to a general ward, and then a Young Disabled Unit. I was fed blackcurrant ice cubes to get the muscles in my face working and the Vicar from my parents’ church, used to visit me weekly. All the time this was happening, I lay unconscious, in a Coma for about 4 months. I would dream I was taking Holy Communion, and the wine was frozen into ice cubes. I was permanently plugged into the heart monitor which would dance whenever my long term boyfriend Jock entered the room!! Ex-husband now!! 😀

I was discharged from hospital, got engaged and started out patients therapy with Sheffield Community Brain Injury Rehab Team where I am still involved now in a Co-production research group. I learnt the skills I needed to live. Years passed, and we had 2 lovely children, Daisy now aged 17 and Finn now aged 13. The residual effects of my brain damage were left sided weakness, epilepsy, hyper sensitivity, impaired vision and no auto immunity.

At the age of 39, my life fell apart my husband left me and the kids then aged 6 and 2. He drove off in my mobility car so I had to get my kids to school and nursery. I had no choice but to get an electric mobility scooter. It was horrid at the time!!!

Years passed, and I put on weight, and my kids had learnt to cycle. I wanted to cycle with them!! So I phoned Disability Sheffield (remember the name!!) and asked if they knew where I could borrow a Tricycle. They gave me Steve Marsden from national cycling charity CTC. This man has changed my life forever!!

Caroline Waugh 1

Steve visited my house, came on the School run with me. Me on my electric scooter, and him following on his push bike. It’s about a mile uphill, we got back to mine and he said ‘Yes you’ll do fine” but I did find it tough. So I began a 12 week course with non-disabled people, who met once a week, them on their 2 wheeled bicycles and me on a ‘Sit up and Beg’ tricycle. I met some of the best folk I’ve ever met when I began my cycling journey and they are still dear friends now. Including Dave Brenen, who cycled the Sky Ride with me, and is pictured.

The course finished, and the next one was in another park, at the other side of the city the Beloved Hillsborough Park which is now home to Sheffield Cycling 4 All wwwsheffieldcycling4all.org. In order to get there I became a Health Champion, encouraging people of all abilities to cycle. I became infamous 🙂 for my Blog ‘Doesn’t Sweat Much for a fat lass‘ (which is a lie, because I sweat buckets.) Meanwhile the CTC had bought me a Recumbent Trike, and Steve had taken me around the country to find it, eventually from West Country Recumbent, who are still very supportive of me now, 6 years later. I bought one using my divorce money and some from the CTC. By now I was doing the school run twice a day, which meant my visits to the GP, went from once a month to once in 2 and a half years – they sent for me, because they missed me!

In 2010, I won Pride of Yorkshire, and spent the night in London at a spectacular award ceremony with Miriam Densham.

In 2011, I helped run a new group in the park, known as Cycling 4 All, along with my Hero Steve Marsden, Fred, and Nick, and later Graeme.
I loved it, and I still get a buzz seeing people who find walking difficult, cycling off on one of our adapted cycles.

In 2012 I carried the Olympic Torch, and was invited to the Paralympics with Steve, by Nick Clegg, to see the Cycling.

In 2014 I broke my Tibia and Fibula, (getting out of a car) and I won a Service to Sport award, after being nominated by the lovely Liz Howard who I’d worked with on the Self Directed Support training team in Sheffield.

Caroline Wauch 2

Meanwhile funding for Cycling 4 All, had ceased. New people were involved, including Emily from Disability Sheffield (I told you that name would crop up again) Sue and David Watts, a Cyclist and his wife/carer, James Unwin, Andy, Jamie, Gavin and Steve. Gavin was replaced by Stuart (web designer and a cycling 4 All enthusiast). We changed our name to Sheffield Cycling 4 All and started charging £5 per bike to cover the costs.

In 2015 4 days after being discharged from Orthopaedics I was diagnosed with Breast Cancer. I kept cycling for as long as possible but the last 3 months of treatment were just too hard. But I did take part in the Sheffield Sky Ride, the day after my 2nd Chemotherapy Session.

Now I’m a 100% clear of cancer, but surgery has left me with Lymphedema in my Right Arm. (typical) but at least I live to ride my bike another day.

My Cancer treatment had made me weak, and caused me to lead a very sedentary life. My lymphedema hurt pretty much all the time. But it wasn’t the worst outcome of me not getting my exercise. The first time, (and should have been a massive warning) I got a thrombosis, in my right arm and was admitted to hospital via ambulance in the daytime. Heaven knows the cost of that to the health service!! The second time was much more frightening. I had a pulmonary embolism I struggled to breath, but made it to bed at midnight, I was gasping very loudly!!! My children aged 12 and 16, insisted that I call an ambulance. I was rushed in blue lights flashing, gasping for breath into hospital and the resuscitation room!! I stayed in hospital, for 3 nights, having to be dressed, and washed and discharged with a prescription for 2 injections a day.

Despite me asking repeatedly asking to use my personal budget to have my trike upgraded with a Pedal Assist Motor, so that I could continue my daily exercise and continue being an ambassador for Sheffield Cycling 4, All Sheffield Social Services refused. I believe strongly that if I were able to get back on my trike, not only would I be feeling the health benefits of being active (which I believe are a necessity for me, not a ‘nice to have’) but I would also able to get out and about more independently (I currently have to pay a PA to take me out and about). I am eligible for a personal budget which would pay for the new Pedal Assist Motor and would meet the outcomes I agreed with my social worker in my support plan and still to this date, my Social Workers manager, will not sanction keeping my pedal trike on the road. My personal budget has been restricted, taking away my choice and control. But I will keep trying and will let you know how I get on.

Caroline and her team run cycling sessions at Hillsborough Park in Sheffield from April to October. Please visit the Sheffield Cycling 4 All website and the Facebook page to find out about the sessions.

Follow Caroline’s blog ‘Doesn’t Sweat Much for a fat lass

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