Wednesday, 4 December 2013

50


Ha ha, just when you thought I’d gone quiet, I’m back. That’s the good thing about being dead you can pop up anywhere.

So these blogs are a sort of post script to my original blogs. I thought you might like to catch up with the OSO’s doings and of course the rest of the family, also thought I might put forward some of my views with regard to what’s going on in the world today. Well at least I can’t be sued for libel as I’m already dead!

The OSO is thinking of publishing my original blogs as an ‘e book’.

She has had thousands and thousands of people reading the blog many of whom who have said it must be published as it is so good. So she’s had a word with a friend in the trade who thinks it is ‘a runner’ and so she’s going to give it a go I think. What do you think?

Monday, 28 October 2013

49


So there I was stuck back in hospital with the OSO, both of us with rotten chest infections! She said she was fed with me having everything wrong with me she was going to have a go!

Needless to say, mine was a lot worse because by the time they had x-rayed me they find out that I had pneumonia in both of my lungs. Well if you’re going to do it, you might as well do it properly! So I had to have loads of antibiotics through my line. On the other hand, the OSO just had a really bad chest infection, though it didn’t stop her trying to kick me out of my bed so she could get in instead. What with her and Dad, who always ate my food and then fell asleep when he came to visit me every evening, I really did have a lot to put up with!

It wasn’t a great deal of fun in hospital, I had to be in a room on my own ‘cause they didn’t want me to infect everybody else, the only bright spot was that I got to miss having to take my mock GCSE’s as I was in hospital, to be honest I was quite surprised that school didn’t bring them for me to do in hospital!

Eventually I got better enough to go home again, but I still couldn’t manage full days at school, so I went back to picking and choosing which lessons I went to.

By March I was feeling pretty grotty, and one Tuesday Sheffield United had a match at home in the evening, so I just went into school for the morning and came home at lunch time so I could rest in the afternoon so I could go to the match in the evening, cunning plan eh? I knew what my priorities were!

However, things didn’t go quite according to plan because I was struggling to breathe; I had an oxygen cylinder at home by this time so that usually helped me to breathe if I was struggling, but that day even that didn’t help. The OSO and I came to the conclusion that as much as I wanted to go to the match, I really wasn’t fit enough to go.

The problem was that Ali and Roger were also due to go, but that was soon solved as Claire said she’d take them with Sam, her son and our good friend, so in the end that was what happened. Needless to say, I was not dead chuffed went they all went off to watch my beloved United.

I struggled during the evening with my breathing, Mum rang my cancer nurse who promised to come round with some more oxygen, the OSO also rang our lovely GP, so I could tell she was worried. Dad was home by this time. Mum wanted to stay and sit with me in my room, but I said I was fine thank you. As ever, being the person that she is she kept coming back into my room to see how I was doing. It got to nine o’clock and I was wanting to know what the score was at the match, when I suddenly really couldn’t breathe and my heart was going mad, Mum kept hugging me and Dad was there, eventually I got my breath back a bit enough to tell the OSO that it’s true what they say, your life does flash in front of you; and then I’d gone off again.

This time it was for good.

That was it, I wouldn’t breathe ever again. The Muscular Dystrophy and cancer had finally beaten me.

As you might imagine, that night was dreadful.

Dad had phoned Claire who was on her way home from the match what had happened, so she stopped for a pizza, like you do, on the way home to give Mum and Dad time to try and sort things out a bit, The doc arrived and she was great as was the cancer nurse who had just arrived with the oxygen cylinder!

When the brothers arrived home they were devastated I had died. (I should hope so too!) Eventually they managed to get Ali into bed and Sweep, our collie dog, did something he has never done before or since and he jumped onto Ali’s bed and stopped there with him all night.

The funeral people came and took me away, I think that was one of the worse moments for the OSO who didn’t get any sleep all that night.

The next day Ali’s rugby team was due to play in the Derbyshire cup final; so good lad, he went in and played and they won, cheered on by the rest of the family, when you can’t let things get in your way!

I was glad to say, that school did a lot of counselling for my mates who were upset that I had died.

The next thing to do was to arrange my funeral, which was sorted out, as you can imagine by Dad and the OSO. She stood up and talked all about me at the funeral service. She said she’d been to so many funerals in the past where someone who didn’t know the person talked about them when they had died. She said she wanted to do it. I know she found that really hard, because when she was out walking the dogs on the morning of my funeral, she had a little chat with me, and asked to get her through it, which I did of course.

There were loads and loads of people at my funeral. I was dead chuffed with the attendance! The parents and Roger and Alistair had decided that they were going to walk in with me accompanied by the music that Sheffield United played in the ground when they scored a goal! Well, as ever they liked to be different! The brilliant thing was that the particular recording of this song they played at my funeral was one that had been recorded at the game with Liverpool earlier that season (which we won) and I was at the match, so somewhere my cheering was on that recording. That has to be a first I think; how many people can say that they cheered themselves into their own funeral!!!?

Tuesday, 22 October 2013

48


It has to be said the following months weren’t exactly easy for any of us; but as ever we carried on just doing the best we could.

However we had a great summer holiday down in Dover at our favourite place in the bungalow we knew so well in Deal. The OSO was a little worried I think in case I was not very well or needed to go to hospital. As ever the Sheffield Children’s Hospital were brill and they stopped my chemo and other lovely stuff for a while and they gave us the details of the hospital in Dover should we need it, but we didn’t. As I said, we had a great holiday, I got tired a bit quicker, but we had Gran with us as usual, so she and I would sit and watch the rest of them running around if I got tired (actually I think Dad was glad of the excuse to have a little sit down too). Dad and I often went to sit on the cliffs behind the ferry port in Dover and watch the ferries come in and out, which we both loved doing.

One year the OSO had arranged for me to visit the main Dover Ferry Port Terminal. That really was a fab day, I got to go up into the control tower, visit the police station, the customs posts and best of all we went out on the harbour patrol boat and we took one of the harbour pilots out to a boat so he could bring it safely in. A fantastic day!

Whilst Dad and I watched the ferries Mum and the bros would walk from Kingsdown to Dover all along the white cliffs and meet Dad and me there, they really loved doing that walk, bit energetic for Dad and I, he always said he was built for comfort and not speed!

After we got home we carried on and we went back to school in September, again I picked my days, or parts of days when I went in and all went fairly well. As I said in my last blog it was my GCSE year so I just decided to prioritise and do the ones I wanted to, being a bit ill did have its advantages at times!

We spent Christmas day with the Villages which was great. I struggled a bit and the OSO and I went home a bit earlier than the rest of the family, but I was ok really and New Year’s Eve was again spent round at a party with all of our great friends there. We didn’t’ believe in letting Muscular Dystrophy and Cancer stop us from enjoying ourselves!

As the rest of the school Christmas holidays progressed I went and got a chest infection. I was supposed to be having some more chemo treatment but I wasn’t well enough to have it. By this time I was having weekly visits from a cancer nurse at home. She just checked I was ok and would do lovely things like wash my stent out (what joy!) She was really great and the OSO and her got on like a house on fire (basically they were both round the bend!). Anyway, my chest infection wasn’t getting any better, so the cancer nurse said I’d better go back into hospital for some antibiotics on line as it were. So that’s what happened.

Monday, 14 October 2013

47


Meanwhile the oncologist was shouting for me back in hospital to have some more treatment. My treatment happened in sort of batches. I would go in for a couple of days at a time over a period of ten days or so and then I could go home and back to school and just go into hospital every few weeks or so when the medics could try and assess how my cancer was responding and I could have a lovely blood test to see if I was neutropenic or not. Neutropenic means you have a low neutrophil count (that helped explain it didn’t it!) Basically when someone is having chemo treatment all the new growing cells in the body are zapped out (another medical term) and this means not just the cancer cells but also good red and white blood cell, neutrophils  etc and hair growing cells (which is why hair falls out!) so this means that you can end up being very anaemic and not having any ability to fight infections and the like. Not the best scenario but there you go. So, back to my blood tests. I had to have them regularly just to make sure that the chemo was not completely wiping all my good cells out. Eventually your body does make up the new cells and you start to feel a bit better again and the medics are really pleased because it means they can give you more chemo and the process starts all over again. Bliss!!!

On the whole I didn’t do too badly. I had to have a couple of blood transfusion as my red blood count was so low, and at one point I got shingles (very itchy and painful) even though I had already had chicken pox (same virus). This meant I kept having my chemo and radio therapy. The OSO and I developed our ‘hospital face’ as I called it. You sort of learn to joke your way through it all to help you cope, we a real double act. One time we went for me to have some radiotherapy and the radiotherapist who was doing it said that she really should have finished her shift, but when she’d seen my name on the list for the afternoon she wanted to stay because the OSO and I made her laugh so much!

So the treatment carried on as did life in our mad household. I sort of developed a shift system for going to school. My treatment often left me feeling pretty ropey and I couldn’t manage whole days at school so I used to go in for parts of the day so I got to pick which lessons I went to. Result. Bit of a drastic way even I have to admit for getting out of lessons! It did mean that all of our lives got even more complicated trying to get all the members of the family in the right place at the right time. It wasn’t helped by the fact that by then both Alistair and Roger were heavily into their rugby and playing at a high level; Roger was actually Derbyshire captain. This meant they had a lot of extra training after school and matches of course, so the poor old OSO was everywhere with us all, she swore that one day she would literally meet herself coming back! She was fine though, she thrived on being busy. As ever our good friends were brilliant and helped out enormously in all sorts of ways by ferrying the brothers and even leaving meals ready in the kitchen that Mum just had to warm up for us. I’m sure we wouldn’t have managed without them.

To add insult to injury I was in year 11 and this was the year I was to take my G.C.S.E.s, flipping heck!

Thursday, 3 October 2013

46


So the question was how to mix having chemotherapy and doing my year 10 work experience at Sheffield United?

Answer: get the OSO to arrange a meeting with the consultant oncologist who was organising my cancer treatment. I think she was a little surprised to say the least. She said she had never been asked that before, but then again, as she admitted, she had never met a team like the OSO and me before (that’s what we were, a team, and as you have probably realised by now, quite a formidable one!)

To be fair, she was great and she took the request in good heart and sorted it out so that I would have no treatment around May when I was due to be at Sheffield United. Result!

So that was that, up until then I carried on having my chemo and radiotherapy which wasn’t exactly a barrel on laughs, but it did seem to be working as the tumour in my hand was shrinking. However one of the down sides was by then all of my hair had fallen out (not helped by the fact that the OSO took the horse clippers to it!) so that I was going to be bald when I was at United.

So the OSO and I turned up at the appointed time at the Blades ground on Bramall Lane. It was a shame that mum had to come with me, but there was no real alternative because she had to drive the van to get me there, (though I made her promise to behave herself) also we weren’t too sure what I would be doing and I thought that they might have found me and my wheelchair a bit of a problem, which, as you will have probably realised by now most people and organisations didn’t really know how to deal with me!

Not a bit of it at SUFC, they were fantastic from the start.

There were three of us on work experience from different schools and we were all treated really well and had a great time. The club said they wanted to give us all a really good experience in as many of the areas of the club as they could. On the first day we had a tour of the ground and a good look round and even though I couldn’t get up into the stands, I never felt left out at all. On the second day we went up to the training ground to see the squad at work. Here the OSO was rather embarrassing in that she kept wandering round with the coach quizzing him about his training methods, still it did leave me to go round on my own and chat to the players who were really great. The manager, Neil Warnock came up in the afternoon and he too was brilliant and we all had a great time. At the end of the day some photos were taken of all of us work experience students with the team and Neil Warnock. That photo still has pride of place in our home also we were all given a signed SUFC football, and not surprisingly that is almost like a family heirloom now!

I also tried my hand at working in the club shop and sorting out the orders for the club shirts, but everyone realised that I would have to rely on the OSO to do most of that for me, so in the end I spent a lot of my time in the club archives room which was where they had lots of old stuff relating to the club and they had tours for school children, pensioners and the like going round, this was something I could do well on my own, once I have learnt all the different aspects of what was on show. It was great being there because Dave who worked there was fantastic and it got that all the OSO had to do was drop me off there in the morning and then come back and collect me later in the afternoon because Dave was more than happy to feed me my lunch and take me to the toilet etc,

 ‘no problem at all’ he said.

 Dave and I got on really well and he even offered me a paid job on Saturdays to take groups round the archives. SUFC were brilliant because they found things that I could do rather than just think I couldn’t do anything.

The OSO was really well behaved as well, the only really embarrassing thing she did do was to jump on the club coach just as all the team players were setting off to go to a fixture. She had bought a photo of Phil Jagielka scoring an amazing goal against Leeds and she wanted him to sign the photo as she was going to give to Ali for his birthday which was (and still is for that matter) in May. (he still has it on his wall to this day) You would have thought she was getting on a school coach at work for a netball fixture or something, honestly the brass neck of her! In fairness the players didn’t seem to mind at all, they were really fantastic.

As you might have gathered by now, I really had a great experience at Sheffield United,  I was really sorry when it came to an end,it was one of the best times of my life!

Friday, 27 September 2013

45


So there I was on the cancer ward awaiting my first lot of chemo. After all the scans the docs were pretty sure the cancer had metastasized to other parts of my body (actually, in honesty, I didn’t know that at that point, but Mum and Dad did, not easy for them I think) For the hopefully uninitiated of those amongst you in cancer speak, metastasized means the cancer has moved to other parts of the body. It’s amazing how quickly you pick up the jargon when you’re involved with something!

Anyway the cancer ward clearly wasn’t used to having people with cancer who also had Duchenne Muscular Dystrophy, because they put me in an ordinary bed. What’s the problem I hear you ask (well actually obviously I can’t hear you, it’s just a daft turn of phrase) Suffice it to say that an ordinary hospital bed was not a lot of use to me because I could hardly move myself about at all and I certainly couldn’t sit myself up! At home I had an electric bed with controls which let me sit myself up and lie down etc. This was great (very expensive!) though I still couldn’t turn myself over in it, so every night when I wanted to change my position in bed I had to call either the OSO or Dad to come and turn me over, sometimes I got restless so Mum and Dad were up a lot moving me, you would be amazed how often you have to change position during a night. The OSO said she understood why sleep deprivation was the most effective torture used during the war!!

Back to the ward, Mum explained to the nurses that I really needed an electric bed, but it turned out there was only one on the whole ward (unlike these days when all the beds are electric) but someone else was in it! Bit of a problem!

The staff pondered for a bit, watched me for a while until they actually realised how little I could move for myself; so they decided I needed the electric bed somebody else had. So they waited until that poor person went for a bath and then nicked the bed for me! Result for me, but not for the other person.

I had a file explaining my treatment, both chemo and radiotherapy. The chemo was to be given in a type of cocktail over a few days and then I went to go home for a while and then had to come back in for my next batch, have bouts of radiotherapy, hospital checks to see how by blood counts were doing all to last for a period of three months or so and then see how the cancer responded. What fun!!

So in went my first lot of chemo fed in through the Hickman line, it looked just like Tizer! We had been told that my hair would fall out and that I would feel pretty rough and the chemo would make me throw up or chunder. Not nice, but very risky for me with my MD because I couldn’t be sick properly as my weak muscles wouldn’t let me heave properly so I was in great danger of choking on my vomit (sorry) so I had to have extra drugs to stop me being sick. You see my MD was problem all the time, even for my cancer treatment.

It wasn’t a lot of fun in the hospital I must say, most of the nurses were really nice, but it was pretty rubbish. It caused extra problems for the OSO and Dad because one of them had to be with me at all times because there weren’t enough nurses available to look after all my needs (I could be very demanding) I had to be fed, taken to the toilet, turned in bed etc, etc ( I don’t think they knew how to cope with me in all honesty, having a cancer patient with DMD was a new thing for them; and they had to put up with the OSO)

Anyway as ever, they worked it out and managed for one of them to be always with me, they did a sort of shift system. Lots of our friends were really fantastic and they looked after Roger and Alistair, took them to school, fed them etc, in fact they were fantastic. Others walked the dogs and looked after the horse, to be honest I think there were more volunteers to look after the animals than the brothers, but then that wasn’t all surprising!

What was really bothering me about my cancer treatment was that I was just coming up to the time when work experience happened at school and the OSO pulling a few strings had managed to fix up for me to do my work experience at Sheffield United THE best club in my opinion, I was really excited and looking forward to going and was really worried that now I wouldn’t be able to do it.

 

Monday, 23 September 2013

44


Well, so there we were, waiting for the Children’s Hospital to ring us to tell us the diagnosis. This wait was going on a bit too long for the OSO. That, however, is a relative term for her because two people in front of her represents a huge queue!

Mum knew the Sister in the Intensive Care Unit at the hospital, so she asked her who was the consultant oncologist and had they heard from the Birmingham Hospital with the results of my biopsy. Turned out that they hadn’t so Mum then rang the oncology department and that confirmed that they hadn’t heard anything, and this was the best part of a week since I had the chunk cut out of my hand. The OSO was not amused! So she rang the Birmingham Hospital and after listening to several renditions of The Water Music (which she had always really liked until then) she finally got to speak to the secretary or PA of the chap who had chopped into me. It turned out that his report was still sitting on a Dictaphone tape on this person’s desk and she hadn’t got round to typing it up and sending it to the consultant oncologist at S.C.H. (got fed up of writing it all out) and it was marked as urgent! Goodness knows how the non urgent ones had been sitting there!

I don’t think you can imagine the earful that poor person got from the OSO, but in fairness, she should have got it done ages before.

Suffice it to say that the S.C.H. consultant oncologist had the report sitting on her desk pronto and she then rang us to arrange for us to go in and see her sharpish.

So Mum Dad and I went in the next day. The top lady was really nice even though she had to tell us that I managed to acquire a really rare nasty cancer (though I suppose you couldn’t have a nice one; it’s a bit like when you hear the traffic reports on the radio and they say there has been a nasty accident, what’s the alternative, a nice one?!). it seemed that this cancer normally manifested itself in the abdomen, but I had managed to get it in my hand, well I always did like to be different! It was usually terminal because it was very difficult to treat.

There you go, at the grand old age of 15, I had managed to acquire two terminal illnesses.

Not much you can say about that.

There was then a debate to be had to see if I wanted treatment bearing in mind I already had a short life expectancy in view of my Muscular Dystrophy. Bit tricky as we had to decide like now! I was a bit shocked to say the least in that I knew the MD would shorten my life but I was never really sure by how much. Mum, Dad and I went off for a little walk and wheel round in my case to decide what to do.

We, well I decided I wanted the treatment as I wanted to fight the cancer, as I had done ok so far with the MD. I don’t think Mum and Dad were so sure, but they went along with my decision, so we went back in to see the consultant.


She wanted to run more types of scans and tests to see if the cancer was anywhere else in my body and then I would have to have surgery to have a Hickman line (you can look it up on google if you want to know exactly what it is) put in my chest so my chemotherapy could go in that way rather than having loads of injections.


So the next day the OSO and I were back at the hospital (where we were to spend a lot of time) having a barrage of horrid tests and then I had to go into surgery to have the line put in. After the surgery I would have to go into intensive care for a day or so. I didn’t mind that just so long as they didn’t do it with a local again. We were in the middle of the last test and one of the nurses came to find us to say I was needed in surgery, there’s nothing like being popular!

I woke up in intensive care, and yes the OSO was there again but she was chatting to her mate who was the sister in intensive care. I came round quite well so after a day I was up on the general ward waiting for my first lot of chemotherapy. Whoopee!!

Sunday, 15 September 2013

43


Well, so it looked like I might have cancer, not the best news in the world for us all.

The fantastic Doctor swung into action, and no sooner than he had studied the scan and told us what he thought was the diagnosis, he said that he would arrange for us to go to one of the Birmingham hospitals where they would be able to do a biopsy of what was now called my tumour. To this day I don’t know why we had to go to Birmingham and not stay locally at Chesterfield or Sheffield.

Needless to say the OSO was very upset, can’t say I was too chuffed either to be honest and then to cap it all the OSO started having a go at me for always going to hospitals in boring places such as Birmingham, Leeds (for my heart, another story) and Sheffield. She wanted to know why we couldn’t go somewhere nice like America or Barbados, there’s no pleasing some people!

So off we went to Birmingham so they could cut out a chunk of my hand to see what was in the swelling tumour.

So the OSO and I had to go together, the Docs said I would need to be in for a couple of days or so which meant Dad would have to stay home with the brothers and Mum and I go to stay in the hospital (here we go again!)

The first problem was getting there! Sat nav. hadn’t been invented, or we hadn’t got one, I can’t remember which. The OSO was doing her best trying to get through the centre of a very busy Birmingham not really knowing where she was going. Luckily in my wheelchair in Vera van I had a really good view of the road ahead and the signs so I was able to guide her through quite well though I did had to shout left here, no LEFT at frequent intervals!

Eventually we arrived at the correct hospital and I was admitted onto a really nice ward. Again, everyone was really nice. The surgeon and anaesthetist arrived to discuss what they were going to do. They decided between the that I wasn’t going to have a general anaesthetic but would do the biopsy under a local anaesthetic because it was too risky to knock me out because of the bad way my muscles took up anaesthetics (I couldn’t spell that before, but can now I’ve had so much practice!) I have to say I didn’t fancy being awake one little bit whilst they chopped bits out of my hand, but there was no arguing with them. The OSO said

‘not to worry she would come in the operating theatre with me and hold my hand’(my right one).

They said no she might be squeamish and faint (clearly they didn’t know the OSO)

In the end I had to go in on my own I think the OSO was peering in through the keyhole practically shouting words of encouragement to me, and telling the surgeons what to do -well, you know by now what’s she’s like.

So that was that. I had to stay in hospital for another day and then we were allowed home with my left hand swathed in huge bandages. Mum just said I was lucky it was my left hand because if it had been my right I wouldn’t have been able to drive my wheelchair so would have been stuck. She is SO caring!

We managed to get home in one piece with help and good navigation skills from your's truly. The folks at the Birmingham hospital said they would send the results to the Sheffield Children’s Hospital as a matter of urgency and we should soon get to know what the official diagnosis was and then get the treatment plan of what to do. So it was sit and wait again, the OSO’s best thing!

Wednesday, 11 September 2013

42


Just to make life more interesting, as though it wasn’t enough already, my left hand started to swell up gradually. We couldn’t work it out because it didn’t hurt me in any way, it wasn’t hot, it just swelled! At first the OSO thought it was going like my feet. Yes, you may well ask, but my feet had sort of twisted round and become bent. I know it’s quite hard to imagine, but due to my weak muscles not being able to keep my feet in the correct place my tendons had pulled my feet round sort of inwards. It didn’t really matter apart from the fact that they looked odd in that I couldn’t walk anyway. I suppose in actual fact it would have been much more of a problem if I could walk because I would have just kept going round in circles (yes, somewhat similar to the OSO I hear you say!)

Over the years I had been a martyr to my feet.

 I’d had horrid in growing toenails which caused nasty smelly infections, apparently another side effect of Muscular Dystrophy, they often ached and were a  generally a nuisance. When they treated and lopped off some of my manky toenails I asked them if they would cut off my feet whilst they were at it. The boring lot wouldn’t!

Anyway, back to my swelling hand. So if you sort of get the picture Mum thought it may have swollen similar to my feet. My left hand really didn’t get any use at all because I controlled my wheelchair with my right hand so my left hand just sort of sat there.

In the end the OSO decided to take me to the docs. She couldn’t work it out either and sent us to get it x rayed at hospital. That didn’t show up anything either (unlike my brother Roger who’d been x rayed at the same hospital a couple of weeks earlier to be told he had a broken back, my bros were always trying to upstage me! Actually his broken back wasn’t as bad as it sounded and he just had to keep off playing that silly game rugby for a couple of months)

So we went back to the docs with my hand (well I suppose I would have had a job going without it!) and she still couldn’t work it out. So in the end she gave the OSO some antibiotics for me, but not to take them if the swelling didn’t get any bigger, so that didn’t really help at all.

Anyway, a few days later I was having difficulty breathing again because I had picked up a chest infection. You may remember from a couple of blogs ago that I had sorted out where I needed to go to the local hospital if I had such problems.

Well that worked really well and I was admitted to the ward that knew about me and they set about trying to clear my chest infection so I could breathe again. It does help to be able to breathe! There was a really nice doctor on the ward and he really tried to help and talked to me as though I was a real person, not just a person with a problem. He really helped my infection in my chest, but the he spotted my swollen hand and asked the OSO all about it. She told him the story and he said he wanted to get it properly scanned to try and sort out what it was.

As my chest had cleared I was discharged from hospital. It was actually Good Friday I remember this because the OSO and I called in at Tesco’s on the way home to food shop for the weekend. It was dreadful in there, the queues were awful, you would have thought a siege had been announced and no food was going to be available for another six months! The OSO was steaming at having to queue for so long, patience, as you know, is not one of her strong points!

Any road up Easter came and went and I had to go back to hospital on the Easter Tuesday for a detailed scan of my hand. Would you believe it the really nice Doctor came to see us (he had come in on his day off to see how I went on; I have such a magnetic personality, I did find that people often flocked to me!!)

I had the scan and it showed a big mass growing in my left hand, it looked as though I had managed to go and get cancer as well as having Muscular Dystrophy.

Monday, 2 September 2013

41


Talking about hospitals in my last blog reminded me of another trip I had to hospital whilst I was still at primary school. It happened fairly soon after I had gone into my big power wheelchair, and it happened in a flash!

It was lunch time in summer and we were all outside playing. To this day, I don’t really know what happened, but suffice it to say that I ended up driving my chair into a pillar on a wall, but the only trouble was that my leg got there first ( I know, don’t ask, but in my defence, I hadn’t been in my chair that long and I hadn’t quite got the knack of controlling it properly! You have a go, it’s harder than it looks!)

Gosh did it hurt, but that was that and no one really thought any more of it and I didn’t really like to tell anyone how much my leg hurt. The OSO came to pick us up at the end of school. Not much gets past her, the witch! She took one look at my face and asked me what was up. Obviously I tried to play it down and said I was fine I really did hate fuss, I took after my Dad in that sense ( and lots of others says the OSO). She was having none of it and loaded us into the van and went straight down to the A&E at the Children’s hospital in Sheffield. There they were great and we got to see a doctor fairly quickly who said he didn’t think there was much wrong, but sent me for and X ray anyway. I think everyone except for the OSO was surprised when they saw my leg was broken, she said she just knew, something to do with the look on my face she said (as I said, she’s a witch)

It was quite cool actually because I ended up having a pot on, I got to choose the colour (blue) so in the end it wasn’t so bad and of course I didn’t need to go around on crutches as I already had a wheelchair. It was quite interesting actually because when we were out and about people didn’t stare at me as much in my wheelchair, I suppose it was because they thought I was in it because I had a broken leg, not because I was mad or something. You might think that is a strange thing to say, but I bet you wouldn’t believe the daft reactions we all had to me being in a wheelchair. People would pull their children away from me when they came up to me; perhaps they thought what I had was catching. It was actually quite amazing! But there lies another story!

I had my pot on for about 6 weeks or so, the only down side was that just after I had broken my leg we broke up for the Summer holidays and I had to go down to Kent with my leg in pot, but as I Said, it didn’t really make much difference to what I could do so that was fine.

Saturday, 24 August 2013

40


So, despite everything being relatively smooth and me going to have regular healing and my big op, things didn’t really go too well after that.

I had been admitted to our local hospital on couple of times because I kept getting chest infections. One of the troubles with DMD was that it affected all of my muscles including the ones that made me breathe and let me cough properly. (intercostal and diaphragm) if you want to be correct, so I quite often got chest infections because I couldn’t cough properly to clear my chest of any mucus. I know this might seem hard to believe, but that is how it was, and as far as I was concerned it was one of the worst effects of dystrophy, not being able to cough or breathe very well is not one of the best things in life.

As I got older this breathing and infection thing got to be more of a problem. One night I was struggling a bit to put it mildly, it had to be bad ‘cause Dad and the OSO decided to call an ambulance! (I told you it was bad, that never would have happened otherwise!) Anyway the ambulance turned up and the ambulance people were really nice and they decided that they had better take me into hospital for them to check me out and try and get my chest clearer so I could breathe more easily (good plan I thought). It was decided that Mum would come with me and Dad would stay at home with Roger and Alistair who were in bed as it was night time. Of course they had been asleep but woke up when the ambulance arrived thinking there was something exciting going on. When they found out it was just their big brother who couldn’t breathe they thought it was dead boring and went back to sleep again! How caring can you get?

Anyway the OSO and I got dropped off at the hospital only to have to wait ages and ages and ages (if you have ever been in a situation where you have to wait for something to happen whilst you are with the OSO you will realise that having difficulty in breathing is a piece of cake! She is dreadful, she is so impatient it’s ridiculous!)

Eventually I got seen by some doctor who really seemed to have no idea what Muscular Dystrophy was, let only the problems it brought, it was plain daft! The OSO and I had to explain it to him, which was difficult for me because I had difficulty drawing breath, let alone speaking. In the end they did nothing would you believe it? They said I needed to go and see my GP next day and I was to go home. The OSO was NOT happy, but there was nothing that even she could do then.

By this time it was around 2 in the morning, Mum asked them how were we going to get home? Of you you will have realised that Dad was at home with the bothers and there was no way we could call a taxi at that time in the morning that would be able to fit me and my big chair into their taxi. ( you will perhaps remember from my previous blogs that wheelchair taxis were not a common phenomenon (spelt that correctly first go)) The nurse looked at her askance and and said we would just have to sort it out and left us to it.

In the end Mum had to ring Dad who had to come and fetch us in the van. Of course he had to wake Roger and Ally up and bring them too because he couldn’t leave them alone at home.

The upshot was that next day I did go to our GP who was great, I got some antibiotics for my chest and she stirred things up at the hospital saying it was ridiculous that this situation had occurred. It was then arranged that a week or so later the OSO and I visited the hospital and the children’s ward so if I needed to go in again because I couldn’t breathe they would have some idea of what to do with me!

Sunday, 11 August 2013

39


So it was back at home and carrying on as normal (such a relative term in our family!) . Quite soon after my big operation I was back at school and the OSO was back at work.

We brothers never could really decide whether it was a good or bad thing having Mum work at the same place as we went to school, obviously it had its advantages in that we were all in the same place which practically made it a lot easier, but having the OSO around could be embarrassing, but then a lot of pupils have their parents teaching at their school so I suppose it was just the way it goes. Roger in his inimitable fashion always referred to her as ‘Miss with the big bum’ bless!

By now things had settled down a little, the bungalow had been adapted, we had our lovely van, we were all at the same school and Dad’s business was doing quite well.

My muscular dystrophy continued to slowly get worse and worse, as we knew it would. Mum had been taking me to a healer for a number of years, I know this might sound a little odd to many of you, but as you know, we often referred to the OSO as ‘the witch’. Well she was always a bit of a believer in healing and stuff and she had always firmly believed in telepathy, particularly between her and her animals (well what else!).

We knew the healer couldn’t get rid of my dystrophy, but it really helped me. Mum used to take me about once a month to a lovely man and his wife who lived just above Hathersage, he used to heal me and she saw colours. Yes, I know it sounds odd, but it really did work.

After every visit I always used to feel a lot better a much less stiff. I used to get what they called contractures as my muscles were shrinking and these could be very painful indeed, but after a visit to my healer these would be a lot better and I felt a lot more comfortable.

The healer always used to tell Mum that she would be a really good healer and that she had a real natural talent for it, but at the time, she really didn’t have any spare time or energy for that matter to do anything about it, that was something she went into much later and developed until she is now doing a lot of healing herself, but, as you might have guessed, she works mainly with horses!

Wednesday, 31 July 2013

38


Well, so that was me home after my big back operation, I must admit I was feeling very stiff and sore.

We had been given exercises to do by the physios, one of whom had caused quite a bit of consternation whilst I was in hospital. It was just as I had been transferred back to the general orthopaedic ward when a young physio man (the OSO was muttering that she had shirts older than him) and he said I had to be got out of bed to do some exercises, the OSO protested saying that I hadn’t been out of bed at all yet let alone doing exercises! The man was adamant that this had to happen; but then came the best bit! He said I needed pain killers to do this and promptly gave me morphine, great, soon I was floating along and laughing, and to be honest, they could have done anything they wanted with me! So I was got out of bed and did these silly exercises. I paid the price later though when the morphine had worn off, boy did I hurt!

It turned out later however that the OSO was right, and I shouldn’t have been got out of bed to do the exercises at all, my back hadn’t healed enough for this to have been done so the young physio lad got it in the neck from his boss so to speak, but I did like the morphine!

Anyway, back at home we did the exercises as we were supposed to and the OSO did her healing on me which helped a lot. It was quite difficult adapting though to being totally rigid from the top of my neck to the bottom of my spine, I couldn’t bend at all. We had told that this was going to happen, but it was impossible to imagine what it would be like. It meant it was a lot harder for the OSO to lift me and get me out of bed and into my chair or bath or wherever else I needed to go if you get my drift! Getting me dressed was also very interesting. As ever, however, we managed and eventually my back got a lot less sore as it healed so we were able to do more. In fact when we trudged back over to Manchester a month or so later the docs were dead impressed with my progress and said they said that I had made remarkable strides (as the OSO said, what a stupid turn of phrase to use for someone who couldn’t walk!) and they didn’t think they had have seen anyone heal as fast as me (we didn’t tell them that the OSO witch had been healing me along the way, they all thought she was barking as it was without adding any more fuel to their thoughts!).

So it was back to home and school as normal, life had to be lived as they say. I think the worst down side of having my back done though was that I couldn’t feed myself any more, which I know will sound very odd, but because I had this great big rod down my back stopping me from bending it meant I couldn’t lean forward at all, and because, by now my arms were very weak I couldn’t get my hand up to my mouth, so I couldn’t eat without help which, as you may imagine was a complete bore; but hey ho, if the rod meant I could still keep on breathing it had to be worth while!

Tuesday, 23 July 2013

37


As you know I used to have to go over to Manchester to the hospital for checks on how my MD was progressing, I didn’t much like going to be honest because all they told me was that I was deteriorating which I knew anyway!

One time we went, we got to see the top professor and he decided that it was time I had a steel rod put down the middle of my back! It sounds drastic and believe me, it was!

DMD often means that your back gets all bent (called scoliosis) because the muscles simply can’t hold it upright as they are too weak, this in itself is not a huge problem, but as the prof explained to the OSO and Dad, it could mean that I would have difficulty breathing because my lungs wouldn’t be able to work properly because I would be all scrunched up (another medical term!)even they could see that this could be a problem, but we couldn’t decide what to do straight away despite being somewhat pushed by the prof., so we went home to have more discussions and more time to decide.

Overall, I think the OSO was the least keen of us for me to have the operation; it would be a huge operation, I would have to be in intensive care afterwards and you may remember from my tonsil operation DMD lads are not good with anaesthetics. Also after the op my limited mobility would be even more limited due to me having a huge great steel rod holding me bolt upright down the middle of my back, but in the end we decided if it helped to keep breathing for longer we would go with it.

Mum and Dad always involved in discussions about me (very considerate!) and it was often really difficult to make decisions like these, because at best, we were guessing.

So I was scheduled to have this big operation at the Manchester hospital where the experts were. This was going to mean a lengthy stay in hospital for me and the OSO who would be coming with me (I couldn’t persuade her not to). This again proved to be somewhat of a logistical nightmare organising time off work for the OSO, sorting out care for Al and Roger, and most importantly, who was going to walk the dogs and feed the cat!

In the end it all got sorted and Mum and I were deposited at the hospital ready for my operation. I had to have loads of tests to make sure I was fit enough for the op (things like making sure my heart was beating ok, quite important I thought). Eventually we got to the morning of the operation, both the OSO and I were pretty nervous, but as usual, we joked our way through all the pre op stuff and eventually I was sent off to sleep (kind of them I thought) for the very long op. During the operation the OSO took herself off for a very long walk. I know, most parents sit in a room by the operating theatre, but I’m sure you know the OSO well enough by now to know that she would never do the same as normal parents!

Apparently the op didn’t go too badly, I kept losing a lot of blood (again another bad side affect of DMD) so I had lots of blood transfusions and my potassium levels were in my boots, but apart from that I ended up alive in intensive care. They kept me asleep and sedated and on a breathing machine for over 24 hours. That, they told us was what they always did and it gave the best chance for recovery and who were we to argue, something the OSO never did!

Eventually they took me off the sedation and I slowly woke up only to become increasingly aware that the OSO was faffing about, muttering about feeding me bananas because of my low potassium levels (I ask you). Eventually Mum and the nurses realised that I was awake, but couldn’t speak because I had the breathing tube still down my throat. So they found a spelling board for me. I had to point at the letters to spell out what I wanted to say, very laborious, but at least it meant I could quickly as possible spell out

‘shut up Mum’

It wasn’t too bad in intensive care, the nurses were great and Mum felt very supported too. Eventually I was transferred to high dependency and then onto the orthopaedic ward where there were lots of other kids who had had bone type operations. By this time we were both getting bored and wanted to go home, my back hurt like mad, though I was given lots of pain killers, the OSO had started to climb up the walls as might imagine. Dad and Roger and Al came to visit a couple of times, but it was a long way for them to come; though one time they bought Rfor with them to visit me. Rfor was my pet rat (R for rat) and he was fantastic, I really rated him, he used to ride round with me on my wheelchair sitting on my shoulder. He always knew the time I would be coming home from school and would sit on top of his cage at about 4.45 the time I got home most nights. Anyway Pop and my brothers fetched him to visit me, it was fantastic, all the other kids on the ward thought he was brilliant, he went to see all of them, the nurses weren’t so keen and hid in the nurses station! It made my day though!

Eventually we were allowed home and then got on with ‘normal’ living, though what was normal for the wood household I was never sure!

 

 

Friday, 12 July 2013

36


Mum and Dad were out the other day with friends and were they were talking about taxis and the time they became taxi drivers, not just like the normal taxi drivers that parents are, but proper; registered taxi drivers!

As you can imagine, in our family it was never going to be straight forward!

I’m going back a bit in time to when I started at secondary school. You may remember it was out of catchment though it was agreed by the LEA that it was the best school for me so that was all fine. The problem was getting me there. I couldn’t get on the school bus, despite the OSO’s best efforts even she couldn’t get me on the bus in my wheelchair. Technically, the LEA should have provided me with a taxi, but because the school was a bit far away they couldn’t get their act together so Mum had to take me and bring me back each day, which was very difficult ‘cause she was working elsewhere and the brothers were still at primary school.

 

Mum and Dad went to yet another appeal and it was decided that the LEA had a legal duty to provide a taxi to get me to school and back. Result. The problem was then finding one that could safely carry a wheelchair. One turned up as just a van with a lift and with no way of securing my wheelchair so I would have just rolled around all the time, and, as casual as the OSO could be at times, even she decided this was not ideal! So another taxi firm was found, but they proved to be completely useless and very rarely turned up on time to take me to school (which, to be honest, I thought was rather a good idea) but then they often didn’t turn up to take me home (not such a good idea).

By this time, as you may remember from a previous blog, Mum had got a job at the school so she said she would take me. The LEA said

‘No’ that couldn’t happen as she wasn’t a registered taxi driver

The OSO said it was ok she wouldn’t charge the LEA she would just take me because there were no safe or reliable taxi firms available.

 

They said ’no’ it had to be a registered taxi driver that took me and then they could then pay them! I know it was ridiculous!!!

By now you have got to know a little bit about what the OSO was like.

You guessed it; she became a registered taxi driver! Well she would, wouldn’t she?!

 

Mum and Dad both decided to become taxi drivers, so they swotted up and took the ‘knowledge test’ and passed, Vera van had to be checked registered and plated. The first thing Dad did was to take Vera and drive her round Sheffield in all the bus and taxi routes which normal drivers weren’t allowed in!

 

So, in the end the OSO got paid to take me and bring me back from school every day, even though by then she worked there and Roger and Alistair also went to school there, how daft was that!!!???

 

Sunday, 23 June 2013

35


Well yes, you may have guessed it, she’s bought the horse! She had him on trial for a few days and chucked lots of things at him (not literally) and rode him doing lots of different horsey things that she does, then she had him vetted on Friday, and he passed (for the uninitiated amongst you a vetting is basically checking it’s healthy and hopefully not going to drop down dead!) The vet really liked him and said he was ‘really athletic’.
Dad, bless him thought the vet was talking about him!
Poor old Dad got really confused about the process of buying the horse in that the OSO had described him as being green, forward going, and short coupled.
As Dad said

‘Why would you want a horse that was coloured green, only went backwards and was like a train!’

To be honest I never could really understand Mum’s enthusiasm for horses, it all seems to be far too much like hard work and dangerous for that matter.

Dad and Roger and Alistair also have a great love of a hugely complicated game; Rugby Union, what a stupid thing to watch! Dad had always played it at school and up at Sheffield Tigers, he loved it. Mum watched him a few times and christened him ‘The M1’ ‘cause all the opposition players just ran over him when he tried to tackle them!

Roger and Alistair played at school and for Tigers and for Derbyshire, (Roger actually captained Derbyshire) and Notts Lincs and Derby, so they were quite good I suppose.

However, I didn’t share their love of the game. It’s really hard to follow, it stops and starts all the time, someone just gets going with the ball and then everyone else just jumps on top of him and the play stops, yet again, they are only allowed to pass the ball backwards to each other (how stupid is that, passing it the opposite way you want to go?!!!) plus they didn’t have ‘rules’ they had ‘laws’ how up your own you know what is that?

I found football to be a MUCH better game to follow, it is dead easy to understand what is going on and far better to watch so I decided that this was the game for me! Dad had always supported Sheffield United, though he hadn’t actually been to a match for donkey’s years, but I persuaded him to take me to a match.

It turned out that the club had a really good area for wheelchairs and they had a fantastic attitude towards people in wheelchairs in that they didn’t stick them in a remote area of the ground where you couldn’t see, but they put us really close to the centre of the pitch where we could see really well and friends and family could all sit with us wheelchair lot, unlike lots of other grounds. All in all it was great and I went loads, rarely missing a home game. In the end all the family got into Sheffield United, and more often than not, we all used to go together as a family which, let me tell you, didn’t happen very often! This enthusiasm for the game permeated beyond the Wood family, in that the Villages, Harrisons and Sutherlands and a lot of my school friends got really into the game, so SU’s crowd got quite a lot bigger because of me!

I loved the game and United so much that I did my work experience there in  year 10, but that, as they say, is another story!

Saturday, 15 June 2013

34


Bit of a long time since my last blog, but the OSO has been gadding about quite a lot and as you know I need to keep my eye on her!

She was up at Bramham  horse trials last week acting as groom for a friend, she really enjoyed it hob nobbing with the likes of William Fox Pitt, Mark Todd and Zara Philips, I ask you!

She got back home for a day and shot off down for a couple of days with Roger to help him buy a new kitchen and other things for his house. The OSO and Roger together spending is a potentially lethal combination. They did order the new kitchen and sort out a builder to do the extension on the back of Roger’s house, starting next month, I was actually quite surprised that Mum didn’t get a sledge hammer and start knocking down the kitchen wall in preparation for the builder.

Roger has already done quite a bit of work on his new house, mainly decorating at this stage; he’s been very clever in getting the carpet to match the wall he’s been painting by splashing the paint on the carpet as well as the wall!

 I can tell you Dad and Alistair were a little worried to say the least by the potential damage the two of them could do together.

 In fairness though, I think the time they spent together went off very well and not too disastrously there is still a little money left in the bank.

They do concern me though, this week Roger has managed to break his new television and the OSO complained yesterday to Alistair that her mobile had broken and it wasn’t writing texts properly, Al checked it to find she’d got it set to send texts in Turkish! Duh!!

The OSO has also been looking for another horse to buy for the last couple of months (she hadn’t let Dad know about this by the by). She says she wants to get another youngster before she gets too old. As far as I can see on both counts she’s wrong;

a-   she’s too old already and
b- she already has two youngsters at home one of which (Flapjack) she states she wants to train how to haul logs and chain harrow though I don’t think she’s told him of her plans yet; welcome to my world! Any road up she has finally found one she quite likes, so watch this space

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