So I thought it was probably time for me to blog about my illness/disability. It will help you guys out when I keep mentioning it, because you will know what I am talking about!
It is called Friedrich’s Ataxia, and the official definition is:
Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system, resulting in symptoms ranging from gait disturbance to speech problems; it can also lead to heart disease and diabetes.
The ataxia of Friedreich’s ataxia results from the degeneration of nerve tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement of the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath (the insulating covering on some nerve cells that helps conduct nerve impulses). Mentation is spared in this condition.
What does this mean for me?
Well, at the moment I am permanently confined to the wheelchair and have some trouble with coordination involving my upper limbs and especially fingers. Due to this, I also suffer from diabetes, a heart murmur and speech difficulty.
I have a 24-hour carer to help with day to day tasks such as washing, cooking, clearing up, and general fetching and carrying. They also drive the adapted car to places that I want to go, and basically, they are there to enable my life.
When it comes to typing, I use the dictation tool called Dragon.
Friedreich’s Ataxia can be likened to Multiple Sclerosis and Motor Neuron disease in the effects that it has on the sufferer.
But, I am not the sort to complain about what I can and can’t do. The reason that I am posting this, is simply because, I keep mentioning the disability on my blog. I definitely do not want any pity for this, it is my own challenge, and that is how I look at it. I do not think a bit as a cross to bear, instead, it is part of who I am, and I have no desire to change that!
There are plenty of things that I want to do, and so I am far from beaten… I am enjoying life and grabbing it with both hands at all times!
If there are any other sufferers out there that read this, and want to talk to me about it, they are most welcome to do so. If you know any others that find want to read this then feel free to pass on the link.
I hope that the things that I do (or have done) will inspire people to carry on regardless. I have travelled quite a lot, I’m always at concerts, go to festivals, have been on stage at a concert (Thirty Seconds to Mars), go to conventions, make a habit about rubbing shoulders with the rich and famous, enjoy my writing, love reading (my Kindle has opened up a new world for me in this respect), and did my university degree in criminology.
As you can see, I do not let anything stand in my way!
Don’t let anything stop you doing what you want to do either! 🙂