Monday, 27 May 2013

33


One thing our family and friends got involved in was fund raising for the Muscular Dystrophy Charity. This took many forms.

As I have told you in previous blogs, the OSO took up marathon running, (remember embarrassing moments with Sally Gunnel and Roger Black?) for a number of reasons I think; one being that it gave her a bit of time on her own, another being that she was, and still is an activeoholic (if there is such a thing, I’m not sure if there is ‘cause the computer has just underlined it in red!) and thirdly she did not have to arrange to go and meet anyone to play a game such as tennis at a certain time which was difficult for her as time was always such a premium, she could just go. Finally it was a good way of raising money through sponsorship.

She had run a couple of marathons before she had us boys so she decided to run the Sheffield marathon and then from that she ran three London marathons and ended up running the New York marathon, in all I guess she ran about seven or eight. Despite what a lot of people seem to think, a marathon is always the same distance wherever it is run, what the OSO learnt was what made the difference was the route it took, not where it was. Obviously a hilly route was always far more difficult than a flat route and some marathons were two circuits of a half marathon which she found psychologically was a killer!

The OSO was, and still is not, a natural build for marathon running. As you probably know the tall lean runners with the long lever legs find it easier to run for long distances, Mum is more of an 8oo metre runner build being really too short and stocky for good marathon running. However, not to be deterred she started training, and as ever, once the OSO had decided to do something, she put in loads and loads of work. She trained very hard for all of her marathons whatever the weather, and she always put in a pretty good time of around four hours, which was not bad going. We always tried to go and watch and support her, particularly for the London marathons, though we didn’t make it to New York.

Obviously she always ran for Muscular Dystrophy as a ‘Rupert’s Runner’ (Rupert Bear being the M.D. mascot) she wore a red t. shirt with Rupert on it. Alistair, my youngest brother has recently taken up doing triathlons and he now wears the very same t. shirt in his races (ahh)

Dad never took part in any runs, he did support Mum in his own way. He would stand in a pub car park, beer in hand, cheering her on as she went past on training runs. He also claimed to have got repetitive strain injury in his thumb clicking the stop watch when she was trying to increase her speed!

Over the years Mum raised thousands and thousands of pounds for M.D. doing her marathons, though she always said doing the marathons was easy in comparison to trying to collect all the sponsorship money in afterwards!


Mum and Dad also raised money every year by running a Muscular Dystrophy Ball every October at Baldwin’s Omega in Sheffield.
This became something of an institution. David Baldwin said it was the best function he hosted all year and he made more over the bar on the M.D. ball night than he did on any other night. It was sold out every year, Mum and Dad did, and I suppose still do, make a great partnership when they are working together. They make a great team, the OSO, as you might imagine, thinks very fast and has loads of good ideas and is great at getting people and organisations to donate prizes and money, whereas Dad is much steadier and has amazing attention to detail and demands everything to be exactly right, bit different to the OSO’s

‘it’ll do’

But whatever, it worked, and the balls were always great very successful, both in terms of raising money and raising people’s awareness of Muscular Dystrophy. Over the years they did raise an awful lot of Money for Muscular Dystrophy. Even today, they are both still working for M.D. granted in a much quieter way, but they are still doing it!

 

Monday, 13 May 2013

32


You may have picked up from my previous blogs that animals were always very important in our family.
The OSO had always had dogs in the family, and you have already heard how she had bought a pony for herself in order to keep herself busy! In fact, to be honest I think we all thought the animals figured far higher in her order of priorities than we did. Dad always said he was somewhere below the gold fish in the house pecking order, don’t think he was joking!
When Roger had just passed his driving test and he and Alistair were going out in the car together with Roger driving for the first time. The OSO said

 ‘Please be very careful, I’ve got my two most treasured possessions going out together in the car’

Quick as a flash Alistair replied

‘But we can’t fit the horses in with us’

My brothers knew where they stood in order of family importance!

 
When I first went into my wheelchair Mum thought it would be a good idea if I had a support dog to help me keep more independence, in all honesty, she was much keener on the idea than I was, because it meant she could have another dog and we all knew as a family that once she had got an idea firmly lodged in her head it was much easier to go along with her than try and talk her out of it.

To this day Dad’s most feared words to come out of mum’s mouth are

‘I’ve been thinking’

He honestly goes white and has a panic attack when he hears them!

Anyway, back to the support dog. You may know that these are brilliant dogs that are trained to do all sorts of things to help people with disabilities. They can be trained to answer the phone or door, get washing out of the machine, in fact virtually anything. I think the OSO was rather hoping they could be trained to do the ironing and even the dreaded sewing (I had to say that word quietly for fear of upsetting the OSO). We already had a dog, Gemma who was a rescued dollop hound. The dog lovers reading my blog may have never heard of that particular breed of dog, indeed you will have never seen it at Crufts because, as you may have guessed there is no such thing, it was just a name she called Gemma who was a big soft dollop of a mongrel. However mum didn’t think Gemma would make a good support dog because she was too big and too much her dog and wouldn’t listen to my commands (I ask you, what a feeble excuse to get another dog!)

Anyway, the search was on and eventually Mum heard of a collie bitch up in North Yorkshire who sounded good. So off we all went in the van to quote the OSO

‘Just to have a look and see if she is suitable’

I ask you, who did she think she was kidding?!

So inevitably, a bit later, we were all driving back from Yorkshire with a lovely little collie bitch called Jilly.

She, Mum and I went on lots of training and she eventually graduated as my support dog and had a special red coat to wear. She was very good, but I never could really work out why I had to call Jilly to go and tell Mum that I needed her (which was one thing she was trained to do) when it was actually much quicker just to yell Mum directly! But it did keep the OSO happy thinking she was helping me to keep my independence.

One of my favourite of Mum’s animals was Boy her pony. He was really great. Mum used to loop his head collar rope around the back of my wheelchair handle and he would just follow me round. He was really gentle. One time I had a real ‘Lassie’ moment with him.
I was with him down at the farm where Mum kept him, and I ran over a bump in my chair and I slumped forward and couldn’t straighten myself up., I was ok, but stuck! So I said to Boy

‘Go and get Mum’ just like I would have done with Jilly, and blow me down he did.

I know, you probably won’t believe it, but it honestly did happen. Needless the OSO laughed like a drain (where do we get that saying from? I’ve never seen a laughing drain) at my predicament and in the end all was fine.

I did have my own pet. A rat. He was awesome. I called him R for (R for rat ARTHER! Get it! Work on it if you don’t, just keep saying it- you will). He used to sit on my shoulder like a parrot and come round with me all the time. They wouldn’t let me take him to school (boring people) but he used to know what time I was coming home from school and climb to the top of his cage to wait for me coming in. When I was in hospital having a big operation on my back Dad brought him to visit me. All the other kids on the ward thought he was great, the nurses weren’t as impressed and hid in their nurse’s station!

Over the years lots of animals have come and indeed are still coming in increasing numbers into our family. I for one, was very glad, they do add so much to life, I wouldn’t have been without them, honestly Mum!

Wednesday, 8 May 2013

31


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