Another parking issue...

I’ve spoke about parking with a Blue Badge on here before and mentioned the couple of tickets I’ve received as a result of the rules being unclear. These costly penalties have made me very cautious of where I park and because of my swivel out chair, it’s normally easier to use a designated disabled bay. There are a few dotted around St. Albans but nowhere near enough. The good thing is unless otherwise stated, there is no time limit on how long you can park so I don’t have to worry about getting back within three hours. However it is difficult to find disabled parking spaces, especially when they’re needlessly blocked.

I found this out to my annoyance last Friday evening when I went to see ‘Dreamboats and Petticoats’ at my local theatre. My carer and I wanted to have dinner before the show so overall, we would definitely take longet than 3 hours., I therefore knew from a previous experience that we couldn’t leave the car on double yellow lines outside as a traffic warden may give us a ticket after the time limit, even at a ridiculous time such as 8.30 at night. Not to worry though. There were 3 disabled bays around the corner (back of Alban Arena and council offices) where we could park for however long was necessary.

The only thing is because they are the main completely free bays in the City centre; they’re pretty much always filled. Normally by cars, not a HGV. When we went to see if one was available, it was clear that the answer was no because a huge ‘Paul Matthew International’ lorry was parked across the bays. As you can imagine, I was positively outraged and cannot repeat my obscene language (good job I write better than I speak). I mean why could the production trailer not be blocking the bays reserved for the mayor? I don’t think I’ve ever seen a car in that space.

I feel a letter coming on- a) if I get the time and b) if I can be bothered.

Bye for now!

I can’t walk…

You would think that being a self-proclaimed ‘Wheelchair Boy’, people would understand that I cannot walk and this fact is not going to change anytime soon. It’s an obvious statement right? My younger brother just proved that by walking in my room while I was writing this post, reading the title and saying, “Well done Einstein”. Quite funny but I wish that others would understand that disability isn’t a game that I am going to get bored of soon. I have accepted that there will not be a cure and I will be wheelchair bound for the rest of my life so others should do the same.

I completely understand that people who care about me are desperate to get rid of my Friedreich’s Ataxia and want to see me walk again but quite frankly, that is not realistic. There is no cure and I think there is more chance of Tottenham winning the league than one being found in my lifetime. However, some family members will read about a new miracle invention and think that it would help me as if they’re doctors who know everything about my condition. Whether the NHS would fund it is a whole different matter but if there was a way I could regain my ability to walk, the experts would soon tell me in case I wanted to fund the cure privately.

The example that I’m referring to is called the ‘powered exoskeleton’, a mobile machine that assists paralyzed people to move their limbs and get them back on their feet. I’ve heard about this invention before but it’s seems the story has entered the media spotlight again recently because a few relatives have brought it up. It is an amazing technological advancement and I think it’s great that people who can’t walk after an accident for instance can do the unthinkable but it would not work for a condition like FA.

Why? As I’m not a doctor, I don’t know the exact details but it’s something to do with the fact that Friedreich’s has attacked my muscles and means they have less energy. Where as, a person who is able-bodied but then suffers a spinal chord injury has working muscles. It’s just that the messages from the brain are blocked. Wearing an external body suit combines the muscles, which are already present, with the motors to mimic the human walking action.

I hope that clears it up. I can't walk!

Bye for now!

Twitter change…

After almost exactly 5 years (I first joined in July 2009) and over 46,000 mind-numbing tweets, I have decided to leave Twitter. Not completely as social networking is an important marketing tool and is useful for promoting my blogs. However, I’ve left my personal account because it was distracting me and I could put the time I spend checking my mentions to better use, such as reading books. It was made clear that I am a ‘Twitterholic’ when I left school back in 2012 and was voted the Twitter king but I never saw it as a problem. Until now. I realised over the weekend that I am always complaining about not having enough time yet will happily waste the day looking through, what is in essence, utter rubbish.

If you are on Twitter and do enjoy reading what ‘Wheelchair Boy’ is up to, please follow @GlenShorey. I had to use that handle because most variations of ‘Wheelchair Boy’ have been used so I’m clearly not the only disabled person who came up with a funny nickname. Pretty much everything I tweet will either be a link to this blog or one of my others. My other account was a dumping ground for my thoughts but this will be a little bit more professional.

Before I go, I probably should clarify to those who do use Twitter that I’m not saying it’s for losers. It’s just, in my case, not gong on the site as much will probably make me a better person and will allow me to focus on writing. I am quite weak when it comes to distractions so taking away a large one will definitely allow me to crack on with some ideas I have (they will remain secret until finished).

Bye for now!

Abandoned…

The ‘transitional’ period of going from being a child to an adult is normally quite stressful but even more so for disabled young people. Not only are people unsure whether to address me as a kid or a grown up, confusion also reigns over the services I use. For example, since being diagnosed with Friedreich’s Ataxia back in 2001, I have been attending Great Ormond Street Hospital on a yearly basis for a check-up about my overall condition.  G.O.S.H. is a children’s hospital so when I turned 18, I was sent next door (funnily enough) to the UCLH building. That was an easy transition but some have seemingly left me in the cold.

When I was hospitalised due to a heart problem not long after starting University in 2012, the doctors were unsure whom to contact now I was an adult. I had always been at G.O.S.H but was set to see a cardiologist at The Heart Hospital so it wasn’t clear who to go to. It was soon resolved as G.O.S.H. agreed to seeing me one last time (although I was nearly 19) before officially handing me over like a baton. I was happy as the confusion didn’t last long but not all transitions have someone I can be passed to.

I’m now 20 years old (well I have been since December 30^th), which is quite a key age in my opinion, as you have to grow up quite a lot. I am no longer a teenager so unfortunately no longer have that to excuse any unsociable or rude behaviour. Entering my twenties is also seemingly a key age for various services to discharge me and leave me on my own. I had a really good social worker but a few months ago, she left and just told me to contact the duty worker if any problems arise. Same with the Occupational Therapist and the Transition Nurse coordinator.

Not having a specific social worker is the norm in adult care but having a named first port of call is vital when disabled, not just for me but also my family. I want someone that I can build up a good relationship with and approach if I have any issues. Not a completely different person everytime. I don’t want to be explaining my circumstances over and over again. The ongoing problems I am having regarding moving out exemplifies this. So many people have suggested that I speak to my social worker but I can’t because I don’t have one anymore.

It’s like the government are saying if you’re disabled and have managed to reach 18, we will gradually phase you out of life so that you feel isolated and abandoned.

Bye for now!

Rolling Without Limits...

A few weeks back, I received a kindly worded e-mail from the people at Rolling Without Limits (http://www.transfermaster.com/blog/) praising this blog and asking whether I would be interested in writing for them. I accepted the offer but said I would only be able to write every now and then due to other commitments. As you know, I don't always have time to write a post on here and you loyal readers come first so The Adventures of Wheelchair Boy will always be my priority. Don't you worry about that.

Anyway, I've been busy today (and yesterday to tell the truth) so would like to recommend Rolling Without Limits if you are craving posts about disability to read. 'Wheelchair Boy' will return to write a thoughtful post tomorrow.

Bye for now!

Hear me out…

First and foremost, I would like to express my sincere apologies for not blogging last week. My mind was occupied with Arsenal thoughts ahead of the FA Cup final on Saturday so I couldn’t concentrate properly to write a coherent post. Even those who don’t like football probably saw that we won that all-important game so I cannot begin to put into words how happy I am right now. Smiling non-stop all weekend has made me extra tired but I thought I better start writing again before my loyal ‘Wheelchair Boy’ reader’s desert me. Not posting because of a football match is a pretty lame excuse so sorry.

Another reason for my week long sabbatical was that I had quite a full diary with a visit from the physio, a trip to the dentist, being in the audience for a recording of Q.I. and a couple of appointments about my hearing so didn’t have time/couldn’t be bothered to write when I got home. I know they don’t sound like massive events but a single appointment basically takes the whole day, in my mind anyway. Plus, I do have other things in my life to do apart from this blog believe it or not. Anyway, I’m writing this post, eventhough I’m still buzzing from Saturday, and that’s all that matters.

The subject today is hearing. What? HEARING! Didn’t quite catch that? HEARING! I’m not sure what you said. No joke. If there’s a bit of noise to distract me, even just another conversation, I might not fully hear the person speaking to me even if they’re next to my ear. Not great as I can’t really participate in conversations so just sit there like a mute, nodding along and laughing eventhough I have no clue what is being said. I could be the butt of all jokes for all I know but I’m completely unaware.

This type of hearing difficulty is quite common with Friedreich’s Ataxia sufferers so I thought I’d speak with my GP to see if anything was available to help. He said he’d refer me to the Audiology department at St. Albans Hospital. However, it turns out that if you have problems with your ears between the ages of 18  & 65, you cannot be directly referred to see the Audiologist. Instead, I had to go through the Ear, Nose and Throat specialist in Harpenden who concluded that I should visit St. Albans City Hospital for further consultation.

People often speak about the NHS lacking common sense and this illustrates that point. I went for a hearing test on Thursday evening before returning to see a doctor on Friday afternoon just to be told that that my problem was ‘discriminatory’ so I should see an Audiologist, facts I already knew. Talk about jumping through hoops simply to get the right referral. I don’t know how long the process will take but it can’t come quick enough as the problem is becoming  more and more noticeable in social situations.

By the way, I hope you all appreciate that I’ve had to stop watching Wembley clips for a while to write this post.

Bye for now!