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Category: Disability Aids

Wheelchair Woes… finally resolved

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Aids, Disability Awareness, Fighting for Change, Personal, and Wheelchair

Those of you who follow my blog will know of the issues I had over the summer with my electric wheelchair. At the time of writing my last blog, I was awaiting new batteries having only just had another fault resolved.

The drama continued to unfold as a new set of batteries were sent and discovered to be faulty. You couldn’t make this stuff up if you tried! Our summer holiday was fast approaching and after almost two months, I still didn’t have a reliable wheelchair and  I was beginning to doubt how much fun our Center Parcs break would be.

At this point, I was pretty fed up with Invacare, the manufacturer. Up until this point, they didn’t seem too concerned about their catalogue of errors and the effect it had had on my life. However, I think they knew I was at the end of my tether. One evening, I received an email from the team apologising for all the inconvenience and offering us a family day out to Legoland! I was absolutely delighted. Our little boy had missed out on so much because I couldn’t take him anywhere and I knew this would help make up for it!

The next day I also received a bouquet of flowers from Invacare which was also a much appreciated surprise. But better was to come when my wheelchair was finally returned to me that evening, with new batteries! With just two days until our holiday, I was delighted to finally have it back and kept my fingers crossed that my wheelchair woes were finally over!

I should never have been left so long without my wheelchair, particularly when it’s not even a year old, but I do appreciate the effort Invacare went to in order to put things right.

Wheelchair Woes

Posted in Accessibility, Cerebral Palsy, Disability Aids, Disability Awareness, Fighting for Change, Making a difference, and Wheelchair

 

I recently tweeted about how frustrating life can be as a disabled person but how incredibly grateful I am for having such supportive family and friends. Life as a someone who is reliant upon an electric wheelchair can be very frustrating, particularly when things go wrong.

Almost three weeks ago, I had planned an afternoon out at the park with my little lad and his cousins.  It’s rare that they see each other and I was looking forward to time with my nephews and niece.  But on the way to the park, my wheelchair started cutting out suddenly. I’d turn on the power button again, only for it to cut out again after a few hundred yards. With four children in my care, I didn’t feel safe or in control. Luckily, we were meeting friends at the park but I also rang hubby to walk us back.  The chair progressively got worst and eventually, it wouldn’t move more than a metre without failing.  Hubby resorted to pushing me home and the happy, relaxing day I’d planned ended in frustration.

The wheelchair had only been purchased late in 2017, as I’d decided to leave the Motability Scheme, ironically due to slow and extremely poor customer service.  Unluckily still, the company I’d purchased it from had gone out of business a month after my purchase, meaning I had no support in such instances.  So I found a company, Northwick Associates, who unlike so many companies, were able to come out to me that day.  They seemed to understand the urgency of my predicament.  Unfortunately, the engineer who visited was unable to pinpoint the problem despite his 2 hour visit. Nevertheless, he promised that another engineer would be sent as soon as possible.

Two days later, another engineer arrived who seemed to empathise with me and understand that my electric wheelchair is the absolute key to my independence.  He’d spent time the night before his visit studying the wheelchair manuals to try and find the problem.  With some wriggles and jiggles, it seemed he had cleared the error and just to be sure, I did a short test drive and the chair was back to normal.  I was over the moon to have my independence back – it’s hard for me to convey the relief knowing my life is back to normal. Some may think I’m exaggerating but imagine someone taking your car keys or your wallet – how would that impact upon your life?

But my joy was short-lived as the next evening, Friday, the chair began cutting out again as I went to visit my parents. I rang Northwick again only to be told that unfortunately no engineers were available until Monday – at the earliest.  Imagine your car breaking down and phoning the AA or RAC, only to be told you’d have to wait two days for any assistance?!

I should explain that due to previous issues with my wheelchair, we did purchase a very basic back-up replacement in January just to ensure that I’d never be totally housebound. I soon realised though that it was literally to allow me to do the essentials locally – it is very basic and has very little umph!  Try going from driving a brand new Mercedes to a Fiesta and you’ll be on my wavelength.

Monday morning arrives and I’m on the phone again to Northwick but as timing has it, the engineers are on training and unavailable to visit until Wednesday – when not one but two engineers arrive.  Surely between them, I thought, they would identify the problem?  Unfortunately – I’m using that word a lot – they concluded that they would have to take the chair away to strip it down.

I was truly exasperated at this point – if only I’d known how far I was from a conclusion!  Three days later the engineer texted to say the fault had been found, repaired and the chair was ready. Hubby and I decided to collect it ourselves as to save some time.  Once again, the relief of getting my Mercedes back was immense!  But hubby aired caution when I mulled over a solo trip to town.

Wisely so. The next day, as I returned from the local shops, the chair started behaving weirdly – but not quite as before. I hoped it was me imagining the worst until the next day. I was doing the school run and got as far as the school grounds when the chair cut out totally, just as before. My little boy’s teacher approached to see if she could help and I had to try so hard not to disgrace myself in front of her but instead I fought to hold back tears as I tried to explain.

Having managed to get safely home thanks to hubby and a friend, I knew I needed to compose myself before once again phoning Northwick. I should stress I didn’t blame them as they had been more responsive than anyone I’d dealt with in the past, but I was to put it mildly, very frustrated at this point.

Northwick admitted they were now at a lost and offered to contact the manufacturer, Invacare, on my behalf as the chair was still under warranty. Another few days are lost until they send out an engineer.

YET AGAIN, I’m told the chair will be taken away for a thorough investigation. My only consolation is that I’m informed now that the warranty should cover it.  I’m sort of pleased to say the fault has finally being identified, but wait for it. Here comes the icing on the cake.  The replacement part I need isn’t stocked in the UK and has to be ordered from GERMANY. Yes and it was only ordered yesterday. And, oh yes, they are unable or more likely, unwilling to give an expected time of arrival.

Three and a half weeks without my wheels, my independence, my ability to travel and take my little boy to school safely – and that’s all I get.

I saw a tweet quite recently that essentially implied that disabled people should be grateful and satisfied with the progress this country has made in the last two decades to improve disability equality.

I’d have to respectfully disagree.

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!

Disability Etiquette equals good manners & common sense

Posted in Accessibility, Cerebral Palsy, Customer Service, Disability Aids, Disability Awareness, Disabled Access, Equality & Diversity, Fighting for Change, Flyinglady Training, Media, and Personal

My latest book, “A disability Etiquette Guide” is something I’ve been wanting to write for a while now and last week, I was reminded why it’s so important for me to write it.

I was on my way to Nottingham, to the Charity CP Sport, of which I am a proud trustee. I asked for the ramp to be put down  as I use an electric wheelchair. It’s a popular train but I was absolutely astounded by my fellow passengers, who proceeded to rush on to the train whilst the customer service guy was attempting to put the ramp into position for me.

They all rushed past him and me, desperate to claim a seat and a place for their luggage. Never mind thinking about me and how it might be easier for me to get into the wheelchair spot when the carriage is relatively clear of passengers and luggage.  Never mind simple manners and common sense.

One passenger even walked up the ramp in front of me! Unbelievable!

And that’s the essence of my book: Good manners and applying common sense can go a long way in improving the lives of those with disabilities.

Facing a diagnosis of Cerebral Palsy: Hope for Parents

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disability Awareness, Disabled Access, Disabled Parent, Equality & Diversity, Family, and Motherhood

 

I must admit to being a bit of a soap addict.  I was thrilled to see “Emmerdale” doing their bit for Cerebral Palsy Awareness Month, following the difficult birth of Megan and Jai’s baby girl.

The doctors have advised the new parents that due to complications during the birth, which meant the baby suffered a lack of oxygen, she may now have Cerebral Palsy. Though I remember that “it’s just a story,” I have much sympathy with the characters who have no clue about what Cerebral Palsy is or what the future might hold.

It’s scary.  Hard to believe. You don’t know where to turn and at this stage, the doctors can’t make any promises or offer any kind of reassurances. The future now seems like an up hill battle, with the summit seeming unattainable.  That’s how many parents feel when being told their child has Cerebral Palsy – a condition for which there is no cure.  I have no doubt that is how my own parents felt, thirty something years ago, when they were told the same thing about me.

There was no internet back then, nowhere to seek reassurance and all they could do was take one day at a time.  They could only hope and pray that the dim view that the doctors painted of my future was wrong. And indeed it was.

Despite my physical limitations, Cerebral Palsy didn’t rob me of either my intelligence or my desire to lead what some might call, a “normal life”.  Despite many sceptics, I enjoyed a mainstream education which ended in me graduating with a 2:1 Honours Degree from Oxford Brookes University.  I went on to secure full-time paid employment and became a successful manager in a small Disability Charity.

But I also had other dreams and ambitions that when I was born, 33 years ago (almost!), would have been deemed impossible, unthinkable even by those who knew of my fiery and determined personality.   I daren’t even voice my dreams but I knew that I wanted two more special roles:  A wife and a Mother.

Who would have thought, all those years ago, that those dreams would also be realised? On 3rd September 2011, I took some shaky steps down the aisle and became wife to Dean, with the most amazing wedding. Then on 28th June 2013, I became Mummy to the most beautiful little boy, Jack James.

If my parents could have looked into the future and known the life that lay ahead of me, that diagnosis of Cerebral Palsy wouldn’t have seemed half as bad. Yes, there were challenges and it wasn’t always easy but my parents and I maintained two things: hope and determination.

So what would I say to parents facing the same diagnosis?  Firstly, don’t jump to conclusions.  Cerebral Palsy affects everyone differently and it’s important not to make assumptions before you know the facts.  Secondly, a disability isn’t the end of the world and if you don’t believe me, read “Why I love having Cerebral Palsy.” Finally, just don’t give up.  It can seem hopeless, like your life or your child’s will never be the same.  But with hope, determination and a good sense of humour, the future can and will be brighter than you imagine it to be!

Why I love having Cerebral Palsy

Posted in Accessibility, Cerebral Palsy, Disability Aids, Disability Awareness, Disabled Access, Does it wet the bed?, Equality & Diversity, Fighting for Change, Media, and Personal

This week is Cerebral Palsy Awareness Week, with tomorrow being World CP Day.  I’ll be live on Twitter between 1-2pm GMT to answer your questions about cerebral palsy, my life living with the condition and about my memoir, “Does it wet the bed?”.  But in the meantime, here’s why I love having Cerebral Palsy. . .

I get to drive without a licence

I’ve failed my actual driving test SEVEN times! But I don’t really mind as I still get to speed around in my Spectra XTR2 wheelchair and go anywhere that I want to go.  Who needs a car?!

I get free botox injections

But not for cosmetic reasons!  Botox can be used to help tight and stiff muscles which is a symptom of cerebral palsy.  I had it to relieve tightness in my arm and it was really effective, giving me back the full use of my arm.

Watching people’s reactions as I get out of my wheelchair and start walking

One of the major misconceptions I come across is that people who use wheelchairs can’t walk.  I love watching the surprise and sometimes apprehension on people’s faces when I suddenly get out of my wheelchair!  After a few seconds of watching their reaction, I reassure them that I’m absolutely fine!

Not having to queue at theme parks

Probably my favourite reason!  I’m a real dare devil, the bigger the ride, the happier I am and not having to queue is certainly a good perk to having a disability!

Being able to disguise when I’m tipsy

My cerebral palsy causes me to tremble quite a bit but when I have a few drinks, it calms my spasms and makes my speech much clearer!  Nobody can tell when I’m a bit worse for wear!

“Don’t take my baby” – Disabled Parents under Scrutiny

Posted in Cerebral Palsy, Disability Aids, Disability and kids, Disabled Parent, Family, Motherhood, and Personal

I recently sat down to watch, “Don’t take my baby”, a factual drama which tells of a disabled couple’s fight to keep their newborn baby daughter.  It’s a subject close to my heart as a disabled parent myself.

The mother had a physical, life-limiting disability whilst the father was partially sighted and his condition was expected to deteriorate.  As soon as their daughter was born, social services began accessing their capabilities as parents and their every move was scrutinised.  Rather than being supported in their new role as parents, they were automatically assumed incapable and put under the enormous pressure of having to proof that they could look after their little girl. Any parent, disabled or not, would struggle to cope whilst their every move was being observed and their every little mistake noted down.

After four months of cruelling assessment and observation, the couple were eventually deemed capable parents and they were allowed to keep their little one.  The programme brought me back to the early days of my pregnancy, when I used to fret that I could be deemed an unsuitable parent and that “someone” might try and take my baby away from me.

I remember voicing my concerns to my midwife during my first appointment.  Even though I had a supportive family and an able bodied husband, I worried that my disability would raise concerns.  My midwife assured me that nobody would be taking my baby from me and that everything possible would be done to enable me to look after my baby.  I felt reassured and I was confident that once my baby was born, I’d find my own ways of caring for him and that my disability wouldn’t prevent me from being a good mum.

Although I had a lot of support during my pregnancy and special arrangements were made for the birth, this is where the support stopped.  My husband Dean and I went home with Jack and as a family, we found the best and safest ways for me to care for Jack.  It wasn’t easy to begin with but Dean took time out from work to be with me so that I could gradually build my confidence in doing things for Jack.

Nobody offered us any help or an assessment for things which may make life easier. It was just assumed that we were OK and although this was true, I am left wondering who makes the decisions about who should be assessed and who is left to get on with it.

I am grateful that nobody thought it necessary to interfere; my baby is now 2 years old so I think I’ve proved that I am very capable of being a mum.  But I am also saddened and angry that other disabled people are being presumed incapable just because they have a disability and are being put under such intense scrutiny.

Disabled people have just as much right as anybody else to become parents.  As a society, we should be providing as much support as possible and enabling disabled people to fulfil their potential; not automatically and naively judging them based on nothing more than assumptions.

Does it wet the bed? – Free Wheeling

Posted in Cerebral Palsy, Disability Aids, Disability Awareness, Does it wet the bed?, Fighting for Change, My writing, Personal, and Uncategorised

I’m just putting together a book proposal for “Does it wet the bed?” as even though the  book is almost complete, many agents request a proposal as well as sample chapters.

In doing so, I’ve chosen an anecdote to start the overview so I thought I’d share it here! More to come over the coming weeks.

I was at work and my electric wheelchair had broken down. Again. The phone number for the repair service was down ingrained on my memory and I braced myself for another frustrating conversation as I dialled it.

As I’d expected, there were no engineers available for the next three days. The receptionist really didn’t understand the seriousness of the situation and after so many call outs, I was on the verge of losing my patience. I took a long, deep breathe and asked how she expected me to get home safely that evening. Her response was deadly serious: “Can’t you free wheel it home?” It took me a minute to process what she’d said and I almost asked her to repeat herself, just to be sure that I’d heard correctly. Maybe I had wax in my ears? But no, I’d heard her alright and my blood was absolutely boiling. I had to make my explanation to her crystal clear this time:

“If I was capable of free wheeling an electric wheelchair home or anywhere in fact, I wouldn’t require the wheelchair in the first place, would I?.”