I’ve realised in all of my blogs so far that I’ve not really talked much about the effects DMD had on all of us.
I suppose it’s really because it was how we were as a family and we just had to get on with it!
I guess the worst thing was that it just got worse, no matter what we did, one month I could do something and the next month I couldn’t, but that’s just how it was.
For me not being able to walk by the time I was 9 was not as bad as being able to use my arms by the time I was in my teens because once I got my powered wheelchair I could get about pretty well, my chair was my legs, but there was nothing to replace my arms and then everything had to be done for me which, to be honest, was a bit of a bore all round.
We had the bungalow adapted, as I have already said and that was great, though it was very expensive and it was VERY difficult if not impossible to get any help (financial or otherwise) out of the authorities. The OSO had many a long battle to try and get some help, she got very frustrated, as she said, we didn’t want to be in the position of having to ask for help, at times she said it was as if the authorities thought I had got DMD on purpose. I guess any of you out there who have a disability will understand how difficult it can be to get help of any kind.
As you can imagine, the OSO was not upset by being told ‘no’ in fact it was rather like a red rag to a bull in that it just made her more determined to try and sort it. What she often said that we were actually in a much better situation than a lot of families in that she was not afraid to tackle a Consultant of a Director of Social Services whereas other families might not feel able to deal with senior personnel.
At home things in relation to getting around were ok. Round school it was a bit more of a problem in that there was a step up to a lot of the classrooms, but that was easily solved by the caretaking staff making a ramp for me to use, the only problem was that it was never in the right place so one of my helpers had to cart it around! I had a Statement of Special Educational Need in place which meant I was entitled to help all the time I was in school. This might sound great, but to be honest, it was a pain at times because I always had someone with me which was not always the easiest when you just wanted to go round with your mates, and I had a lot of those. (well who would not want to be my friend!?). In theory my helper should have been with me even at lunch and break times, but they were happy to leave me alone to be with my friends, who would always give me any help I needed.
My helpers were actually really brilliant, they understood it was difficult for me and really tried hard not to interfere in my social life and let me just get on on my own wherever possible, but I did need them, because it got that I couldn’t write so I had to dictate everything to them and the OSO had to write all my homework out at night. She got very good at lots of subjects, though she always did struggle with my maths homework, more often than not Dad had to help and even Roger and Alistair were better at it then Mum!
One of the main problems at school was that I kept running over drawing pins and my wheelchair tyres would go down. We used more cans of tyre weld than anything else. In the end I had solid tyres put on my wheelchair which solved that problem.
Another time in the School athletics I was ‘running’ the 400 metres for my house at school, we had worked out how long it took me to go round so knew where I should start in order to stand a chance of being in the mix, the only trouble was, we forgot to charge my wheelchair up that night and therefore it would not go fast enough! I was not happy!
I think one of the worse things about DMD for all of us was that it got that I couldn’t turn myself over in bed at night, so either Mum or Dad had to get up several times every night to turn me into a new position. They use to take it in turns and have two nights turning and two nights not. This meant that they had to sleep in separate beds. Actually I think Mum was quite happy with that arrangement as Dad had kept her awake for years with his snoring!
Dad rigged up a sort of baby alarm so I just used to call for someone to come and move me when I needed it at night. It really was pretty awful really because we all got really short of sleep. The OSO said she understood why sleep deprivation was used as a very effective method of torture! It was worse for her than Dad and I who always managed to do it pretty much in our sleep (sometimes it was really hard to wake Dad up) whereas Mum always had great difficulty getting back to sleep once she had been up to turn me.But, we just had to get on with it, this was our family. Al said that one time one of his class mates had asked him what it was like having a disabled brother. Al said it was just as it was and that I was actually less hassle than his other brother Roger