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!