My story-part 3

Yesterday, I left you all at the point when I was diagnosed with Friedreich’s Ataxia. You might say that I seem to rush through the next decade of my life but it reflects how things have been. One minute, I was walking around (wanting to become a professional footballer) and the next, I’m in a wheelchair permanently.

From the moment I found out, I was sent for yearly heart appointments at G.O.S.H. and yearly x-rays on my spine at Stanmore. My condition gradually got worse from then on and I was soon using a wheel chair part-time. At twelve I was given an electric wheelchair by ‘Whizz Kids’, but still didn’t need to use it all the time. By the time I was fourteen it became impossible for me to use the stairs so our garage was converted into a bedroom. I had to use the electric wheelchair more frequently.

After finishing my GCSE exams at sixteen, I finally had to have an operation to fix my scoliosis. After the major operation, which hospitalised me for over a month due to minor complications, I could not walk so I was permanently using my wheelchair. It took a long time for me to be able to weight-bear in order to do transfers. By the time I could, the Doctors discovered the rod in my spine had snapped and as I was in severe pain I needed another operation.

Two years after my initial operation I finished my A levels and then was operated on for a second time. The procedure was successful and they put a second rod into the bottom of my spine to give it stability. However, there was another crack in the top of the rod, which was noticed after the operation, and they are keeping an eye on it.

This is my story up till now and it has taken a long time to accept that I am in a wheelchair and my body is always changing. My condition continues to get worse and the latest problem seems to be my hearing.

Now I have got my head round it so to speak, I want others to understand what it means to be disabled and that is why I blog. The Big Blog Exchange would give me the unique opportunity to open other’s eyes. However, this dream will definitely not become a reality if the pace of voting continues. Let’s get the votes coming in thick and fast again: http://www.bigblogexchange.org/blog/72005

Bye for now!

My story-part 2...

Welcome back to The Adventures of Wheelchair Boy. Before you get to read the second instalment, I am going to do a recap in the style of the greatest T.V. show ever, Glee. Basically, my mum noticed I was different and suspected there was something wrong with me. The school doctor diagnosed me with dyspraxia and accused my mum of being mental. My parents were angry and adamant that it was more serious. And that’s what you missed on TAWB! Just go back and read it if you don’t understand.

I felt ill on a Thursday and vomited what appeared to be Tuesdays partially digested dinner.  I was immediately taken to the GP’s and the doctor referred me to a food specialised at Watford General Hospital. A week later, at the appointment, the dietician noticed I wobbly on my feet and asked if I always walked like that. My mum said “hallelujah!” She was overjoyed that somebody else had finally noticed. The specialist proceeded to examine my spine before saying that he wasn’t sure what was wrong with me, but would write a letter to my GP.  He then looked at my stomach and told me that the vomiting was probably a “one off” circumstance and therefore there was nothing to worry about. 

A few weeks later we received a letter intended for my GP, but wrongly mailed to my house. It outlined that the Doctor at Watford suspected that I may have Friedrich’s Ataxia and recommended that I be sent for further tests at Great Ormond Street Hospital. I was aged nine.

After I completed the tests, it was confirmed that I had Friedrich’s Ataxia. We had never heard of it and made the mistake of looking the condition up on the Internet when we got home. This scared us as it listed all the worst-case scenarios, and awful things that could happen to me in the future. ..

The third and final part of the story that takes me, up to now, a 19-year-old ‘Wheelchair Boy’, is to be continued tomorrow.

Keeping with the Glee theme, my daily plea to get more votes will be in the form a song. Please help me, it has slowed down recently (haven’t even reached the 200 mark yet). Just click on this link http://www.bigblogexchange.org/blog/72005, click the pink ‘Vote’ button, type in your E-Mail and then confirm it by going to your inbox. Nothing complicated and best of all, it’s free! The lyrics fit so perfectly http://www.youtube.com/watch?v=pJH8JlmFzhc

Bye for now!

My story-part 1...

The other day, one of my regular readers (you know who you are) noted that I have mentioned Friedreich’s Ataxia in previous posts, but not really explained how I became a ‘Wheelchair Boy’. So, seems as I’ve had to write up my story for the Ataxia UK charity, I thought I could share it with my great readers. Hopefully, it answers any questions on my condition and explains my journey (cue the Westlife music). It’s just a quick, whistle-stop tour of my life to now so feel free to ask questions if you want to know more.

As soon as I could start walking, my mum noticed that there was something different about me. The way that I went up the stairs seemed peculiar. Unlike the more conventional/efficient way of ascending, using one foot on each step, I was required to place both feet on each step to remain balanced. Although this isn’t uncommon in toddlers and young children, even after this stage in my life I had not progressed the way most people expected me to. 

At one parent teacher consultation meeting, the teacher told my parents how I did not seem to engage in P.E. (physical education) and was afraid of using the apparatus. One day at home, I was talking to my mum and dad normally before I suddenly dropped to the floor. My mum asked me what happened and I told her that it was a regular occurrence. This confirmed my mother’s fears that something was wrong, so she arranged to meet with the school doctor.

The school doctor believed that the symptoms meant I had a form of dyspraxia. I was then referred to see physiotherapists and occupational therapists to try and help. However, my mum was adamant that it was not purely dyspraxia to which the school doctor told her that she was being over-protective and advised her to see a psychiatrist.  My mum was furious and continued to contact GP’s and physiotherapists regarding my diagnosis, until a case of vomiting led to my eventual diagnosis of Friedreich’s Ataxia…

That is the end FOR TODAY. I’ll finish my story over the next couple I just want to build suspense and keep you coming back.

Before you do come back tomorrow, another reminder of that all-important link in case you either have amnesia or you’re a new reader, which is more likely. http://www.bigblogexchange.org/blog/72005

Bye for now!

Getting a car...

No, I’m not going to learn to drive although most people around my age have got a license. I can’t completely discount it because you don’t know what the future holds but the way I drive my electric wheelchair proves that I am not ready. However, that doesn’t mean I can’t own a car. It may seem silly to buy a car that you won’t actually drive but I have a few Personal Assistants who take me out so it would be easier if I find a car which I can transfer in without problems. They all have cars but some are harder to get in and out of.

You might say just insure them on the adapted Volkswagen Caravelle but there are issues. Firstly, the insurance for additional drivers (on top of my parents) is astronomical and I refuse to pay for it.  Also, as you know, I’m working on my fitness and trying to build up my upper body strength so I am mostly using my manual wheelchair when I go out. Thirdly, when I go on long distance journeys like Swansea on Friday, I’m not comfortable in my wheelchair so transfer to a normal seat. But, I prefer transferring into a small car rather than struggling into the large, cumbersome VW.

The next thing I have to do is visit showrooms and take test drives to see if  it fits my specific criteria. It needs: 4 doors in case I need to get in the back, a fair sized boot to put my wheelchair in, decent speakers for my Glee CD’s and a fuel efficient engines because I don’t want to feed the Oil barons (unless they buy Arsenal out). I’ve had a few ideas like a Suzuki Swift or Seat Ibiza but I’m only go on looks at the moment, I don’t know what the inside is like.

Sticking to the automobile theme, I want the amount of votes to keep driving up. I got a few more votes today and thank you very much. But, as always, don’t stop so here’s the link: http://www.bigblogexchange.org/blog/72005 Please tweet it or Facebook it or even ask people in real life. Do anything to help me out please. 187 is the total today so I didn’t reach  the 200 target I set yesterday. Disappointed.

Bye for now!

The Curious Case of Hotels…

I didn’t blog on Friday because we began our journey to Swansea at 12.30 and arrived at our hotel just over 4 hours later. I didn’t just randomly decide to visit South Wales, Arsenal was playing on the Saturday of course. We did go last year but mum drove there and back on the same day, which was pretty gruelling. So, being the thoughtful son I am, I booked up the Ibis for Friday night. It was OK but hotels are quite problematic, even the ‘disabled friendly’ ones.

When you’re able-bodied, there are no worries about staying in a hotel for a night because everything is basically the same. A standard toilet, bed, shower and even sink. But, everything is set-up to suit me at home so it is quite difficult in a new environment. Hotels claim to be fully accessible but, in truth, they are not prepared for a wheelchair user. I’m not saying everything should be perfectly adapted like my room because you can’t please everyone but these places should accommodate most.

The bathroom is equipped with rails and the sink is lowered but these seemed to be last minute adds on, not thought through properly. Then there’s the shower itself. I’m a bit of a hygiene freak so have to, without fail, wash before I can do anything like eat breakfast. I have a wet room at home and just wheel-in to the shower. However, at hotels, they either have a chair attached to the wall or at the Holiday Inn in Southampton, a shower with rails in a bath. How can I use either of them methods?

I’m moaning but we just about muddle on (my dad pulling a plastic chair on a towel into the shower). It’s not ideal but imagine people who are worse than me. At least, I have upper body strength and can therefore transfer (with support). I know that might not last so what then? I am stuffed is the short answer.

By the way, I am very happy because the mighty Arsenal won 2-0 (wow-another clean sheet). And no, I don’t care that you won the rugby. The only English team that will ever matter left your fine country with a win.

Votes are still coming in so thank you very much. 185 so far but obviously still want more. Let’s say 200 by the time I post tomorrow. http://www.bigblogexchange.org/blog/72005 Remember to confirm your vote by going to your inbox.

Bye for now!