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Category: Cerebral Palsy Sport

Wheelchair Woes . . . Sadly Continued

Posted in Accessibility, Cerebral Palsy, Cerebral Palsy Sport, Customer Service, Equality & Diversity, Fighting for Change, Personal, and Wheelchair

If you have read my last blog, you’ll be aware of my current wheelchair issues and the frustration it’s causing.  At the time of writing my last blog, I stupidly thought I was nearing the end of my issues. Little did I know there was further drama in store.

Frustrated by being told I’d have to wait over two weeks for a part to be shipped from Germany, I decided to pile the pressure on to the manufacturer, Invacare, with regular tweets and emails – highlighting how not having a functional wheelchair was severely impacting upon my independence – please follow @ACBlackborough if you don’t already!

Invacare’s responses were typically along the lines off “we’re sorry and we’re looking into it” which wasn’t really cutting mustard with me at this stage. But then I receive an email, telling me the part would be dispatched that day for delivery tomorrow. Though obviously very happy that two weeks had been reduced to a day, it begged the question why this hadn’t be done to start with? A question which Invacare have declined to answer.

Despite this, I was thrilled at the prospect of getting my wheelchair, and my independence back, after just shy of 5 weeks.  My excitement was dashed when the dealer phoned to break bad news – the part had duly arrived as stated but it was faulty.  After so long, I was unsurprisingly fuming.

Again, Invacare said another part would be despatched for next day delivery. In the five weeks without my wheels, my life had effectively been put on hold. I’d had to cancel numerous plans including work commitments. My spare chair, brought at further expense, is very basic – limiting me to local, essential trips only and even a basic requirement like food shopping, has been really problematic.

So you can imagine my joy when the wheelchair was finally returned to me last Saturday afternoon.  I made plans for the coming week and promised my little boy some trips out.  I committed to attending a meeting in Nottingham, where I am proud chair of Cerebral Palsy Sport.  Life could finally return to normal. Or so I thought.

As soon as I took the wheelchair out, I noticed the battery was behaving oddly – dropping power almost immediately.  Having used electric wheelchairs for the best part of 20 years, I was pretty sure something wasn’t right but I decided to give the chair a couple of long charges before reporting a problem.  Again, I felt limited as to what I was able to do and decided to carry the charger with me, just in case.

When I arrived in Nottingham, the chair was displaying low power so I plugged it in during my meeting and phoned the dealer – Easy Living Mobility – who have been amazing and arranged to visit me the next day.  Despite charging the chair at work, I only just made it home that night – with the chair giving up the ghost on our driveway.

The next day confirmed my fears – the battery was most probably failing and the wheelchair would have to be taken away again to be tested. I’d have to wait 4-5 days for new batteries.  I was utterly fed up – my plans for the next few days turned upside down YET AGAIN.

And what do I get from Invacare?

“We’re working with the Invacare Retailer to resolve this as quickly as possible.”

No apology, no concern for how I’m coping without my lifeline.  I count this now as six weeks – for six weeks I’ve been without a reliable, fit-for-purpose wheelchair but it really seems like Invacare couldn’t give a damn.  They have my money – almost £8000 – and beyond that isn’t their concern.

I’ve only had my wheelchair for 9 months and due to various faults, it has been out of action for 2 of those months.  Considering they talk about keeping people mobile as part of their marketing, I think most would agree that Invacare is failing, miserably.

Happy New Year – That’s life!

Posted in Cerebral Palsy Sport, Family, Motherhood, My writing, and Personal

Happy new year!! It’s that time again when we make promises to ourselves about how we’ll lose weight or give up something and yet we all know, by the end of January it’s all long forgotten! 

Last New Year, I made a very public resolution that I would get my second book published.  As it’s a children’s book and I’d already started it, I felt absolutely sure that I’d set myself a realistic goal. Until around about the 15th January when this little thing called “life” began getting in the way! Firstly, I unexpectantly became Chairman of Cerebral Palsy Sport.  Don’t get me wrong – it’s a role I’m very proud to hold and I love the challenges it throws at me. But it is a time consuming role which I’ve been getting used to.

Secondly, at the beginning of April, my hubby had to take a contract away from home for 3 months, leaving me to look after our little lad during the week. It was a challenging time for us all, particularly as it was unexpected and the energy I poured into keeping things ticking over left me little time for my own work.

Before I knew it, Christmas was within sight and I felt like I’d failed – despite everything that I had achieved in other ways.  “Life” had won and taken me away from where I’d liked to have been but in a funny way, I was glad. I was and still am enjoying my role as Chairman and I’m learning so much.  Hubby working away was probably one of my toughest challenges of 2017, especially as little man still hadn’t grasped the idea of sleeping through the night! But we both look back on it now as a positive experience which pushed me as a parent and really boosted my confidence.

So there are no resolutions this year, no feeling like I’ve failed – I’m just going to go with what life decides and be grateful for whatever I learn along the way!

Though that’s not to say that I won’t try my best to get that book closer to publication!! 

 

Guest Blog: Leon Taylor – Striving to help others with Cerebral Palsy

Posted in Cerebral Palsy, Cerebral Palsy Sport, and Disability Awareness

Leon Taylor has Cerebral Palsy and is a former Paralympic footballer. He’s an Ambassador and Trustee of Cerebral Palsy Sport and also the UK representative of the World CP Day Committee.  Here’s his blog. . .

I was born with Cerebral Palsy, which predominantly affects the right side of my body. As a former Paralympic footballer I now strive to help others with the condition to realise their sporting potential through my work as an Ambassador and Trustee for the charity Cerebral Palsy Sport. Last year I was invited to become the UK representative on the World CP Day Committee.

World CP Day has been celebrated each October since 2012, with more than 60 countries across the world now recognising it. As a person who has lived with the condition since birth I am proud to be the spokesperson for the work of the World CP Day committee in the UK.

This year I am delighted that World CP Day will see the announcement of the inaugural World Cerebral Palsy Day Awards. I really enjoyed judging all of the entries along with my fellow colleagues who sit on the World CP Day committee.

They serve as an opportunity to promote six key areas for change, which have been identified as the biggest barriers for people with Cerebral Palsy worldwide.

These are;

• Public Awareness
• Civil Rights
• Medical/Therapeutic
• Quality of Life
• Education
• Making Our Contribution

On Friday 6th October I will be celebrating World CP Day 2017 by wearing green and using social media to raise awareness.

Guest Blog: Thomas Talbot – My Racerunning Story

Posted in Accessibility, Cerebral Palsy, Cerebral Palsy Sport, Disability Aids, Disability and kids, Disabled Access, Family, Racerunning, and Uncategorised

Thomas Talbot is 13 years old and has Cerebral Palsy – it hasn’t stopped him from becoming a successful international Racerunner. Here’s his story. . .

My story

Picking up my new RaceRunner

Hi – my name is Thomas. I’m 13 years old and I live near Lincoln. I am an International RaceRunner and I have cerebral palsy. I have to use a walker to get around and I sometime use a wheelchair if I get tired.

RaceRunning is an athletics discipline with a three wheeled trike and no pedals. Athletes can run on the track or use it for therapy.

I first discovered RaceRunning when I went to watch a Cerebral Palsy Sport athletics competition in Gateshead in August 2013. There were two RaceRunners competing and I was absolutely captivated by it. It looked such fun and looked like it could be something I could do. The boy that was racing was just like me – using a walker and I just loved the look of it. I badgered my Mum about it for some weeks about it after that!

My 2015 haul of silverware!

I went to a Cerebral Palsy Sport taster day in February 2014 and tried it for the first time. Wow – it was so exciting and I loved the feeling of being able to run without my walker. Then I went to a couple more taster days through 2014 and I told my parents I wanted my own RaceRunnner which we fundraised for and in April 2014 I collected my very own RaceRunner.

I don’t think at that time I knew where it would lead. The physio I had then kept saying that she thought I was getting a little stronger by using it and all I knew was that I loved doing it and it was better than painful physio.

I competed in my first RaceRunning competition in May 2015 in Manchester and then competed the whole season in different places including the CP Nationals. I won four events for Under 13’s and I was also awarded the Colin Rains Trophy for endeavour in my first season. I also won my District Young Achiever of the Year Award in 2015.

European Championships 2016

Sadly I had to have a big hip operation in January 2017 and I was in a hip spica for 6 weeks as they took some bone from my leg and grafted it into my hip. For all those days in the hospital and then recovering at home, all I wanted to do was be back on the RaceRunner (and also watching my beloved Manchester United). During my recovery we worked hard to build up strength as I have quite a leg length difference and this meant hydrotherapy as well as painful physio. But thanks to a good friend I got to see England and Manchester united play football!
I wasn’t able to compete this year until September and I really missed my friends. When I returned back to track racing at the Nationals, I won four golds in the Under 16 age group and nearly beat most of my PBs. I did not expect that!

The RaceRunnner helps me move so easily when I am on the track. I can run with the RaceRunner but can’t do that as easy with my walker. It gives me freedom. I use a chest plate and back strap so my physio also says it helps with my posture and the strength around my middle. I just love to run!

I train two to three times a week in Lincolnshire depending on homework and also what competitions are coming up. If I have training or a competition at the weekend I only train twice in the week.

European Championships 2016

I’m hoping to be selected to go to the CP World Games in Spain in 2018 and represent England. I have made the long list so really crossing fingers for final selection. I was too young when it was in Nottingham in 2015. To be selected – well that would be fab!

I wouldn’t be where I am today without the support of my family and friends. I’ve made so many friends who are just like me and I don’t feel quite so alone. I know when I get to the track or at a competitions I’m going to see them and enjoy having a laugh with them…as well as racing. It has made me much fitter since I started RaceRunning.

I feel much better about myself and more confident. I have made a lot more friends and love spending time with them at the track. I think it has made me believe in myself abit more. I am much more outgoing than I was before I started RaceRunning and I like going to different places to compete. The trip out to Denmark as an England team was awesome and we did have lots of fun!