Wednesday, 28 November 2012

19


Well it had finally got to the time when I needed help with getting about. I think the OSO realised that it was time to do something when she picked my brothers and I up from school one afternoon and I said that I had fallen over in school again. This had been happening quite a lot, usually it was in the playground when I was out playing with my friends and I got pushed over my mistake. It was just that somebody had knocked me and over I went like a Kelly doll! This time however I told Mum’ the wind had blown me over’ and trust me it was only a little breeze, not gale force 9!

So off we went to Manchester to the main M.D. centre where I was supplied with a manual (push wheelchair to those not up to speed with disability speak!) wheelchair so I could use it when I got tired. I found this a great help, but I think Mum especially found it quite hard because I suppose it meant that I was getting worse.

This worked fine for quite a while, but it got to the point when I was about 9years old that I was going to need an electric wheelchair. To be honest I was quite looking forward to getting one because I was finding it very hard to walk and especially keep up with my friends when they were playing.

We already had a van adapted to take a wheelchair and the bungalow we had already adapted the bungalow so it could take a wheelchair in that the doors had all been widened and a couple of walls knocked down to make it easier for me to get around. (I make all this sound so easy, but the alterations actually took quite a lot of time to do and a lot of money. Mum and Dad had to have help to do this from their parents)

Anyway, again I went over to Manchester to a specialist wheelchair place to sort out the right kind of wheelchair for me. I wanted a roller blade/mountain bike type of a wheelchair. The trouble was they didn’t make them like that. This was quite a long time ago and at that time wheelchairs seemed to be only designed for old people, not children like me. Things, I know, have got a lot better, but then there really wasn’t much choice. However, I did get fitted for a chair and had great fun racing it around scaring the OSO nearly to death. It was very expensive, but we got help buying it from the charity Whizz Kids who helped us out with two more chairs in future years.

I thought my chair was great and it helped me get around so much better. Out in public it caused quite a stir! Lots of people did actually talk to me as if I was stupid and would talk to the rest of my family rather than me; but that was something we soon all got used to so it didn’t bother us after a while. In fact very quickly my wheelchair was incredibly popular. My mates quickly realised if they were on their blades they could all link up with each other and if one of them held onto my wheelchair then I could pull them all along in a big sort of chain! It also meant that we could all go out walking as or biking as a family again which was fantastic. Obviously we had to pick where we went, but as long as it wasn’t too bumpy a route or had any steps we got along just fine. It turned out that we could get an electric wheelchair into all sorts of unlikely places; we couldn’t always get it out, but luckily the OSO was also known as the ‘mighty atom’ so she could usually manage to extricate it, we never had to call out the fire brigade!

Sunday, 25 November 2012

18


I’ve not talked much about holidays, other than when we went to North Wales. It got that the cottage didn’t work as there were far too many stairs and I couldn’t get up them.

Instead we used to go camping to Brittany. Mum and Dad used to go there before we offspring had arrived and they decided it would be good to go back again.

We used to go to the big organised camp sites where the tents were already put up for you. We thought they were brilliant holidays. The camp sites tended to be level so it was much easier for me to get around in fact there were rarely any steps at all. I had a power assisted trike which was great. I couldn’t manage a two wheeler ‘cause I fell over all the time which rather slowed my progress so the OSO found a manufacturer who made these trikes. Basically I had to pedal, but when I got too tired, or there was a bit of a hill and I hadn’t the strength in my legs to move the bike, an electric motor kicked in and helped me along(to be honest I would have been happy with it being permanently motorised, but the OSO said it was good to keep my muscles working as long as possible. What did she know?)I was great as it meant I could go out biking with my brothers and all of my friends on the camp site. It was however, very expensive to buy and the parents had to buy a VW Caravelle van with a lift to get my trike and later my wheelchair in; but hey ho!

The trike was designed to be very stable and impossible to tip over,needless to say I managed it!

I was still able to walk a bit at this stage, but running was pretty well impossible. One time we kids got together to organise a ball game as you do. All of the parents were sitting together watching us and slotting down the old wine (what an example I ask you!). After a while they asked me what I was doing walking around with my arms in the air in between my mates who were hitting a ball to each other. We all thought it was obvious that I was the net!

 It often struck me that other children were very rarely bothered about my disability whereas adults invariably were.

Over the years there were loads of occasions where other children would come up to me and ask me about what it was like being in a wheelchair and so on only to be pulled away by their parents. Perhaps they thought what I had was catching and their precious offspring would be affected just by talking to me. On the other hand it may have been because they had seen my Mum and thought she was catching a much worse fate!

Wednesday, 21 November 2012

17


By this time all three of us were at the lovely primary school I told you about before.

When we first started there it was a split site school with the couple of years on one site and then up to a very old school building for the last couple of years. The school had been very keen for a long time to try and get the school onto one site, but the Local Education Authority hadn’t got the money to do it. It was realised though that I would find it very difficult to get around the building in a wheelchair. By this time I was finding it increasingly hard to walk and I had a tendency to fall over! The LEA surveyed the building and decided it would be too expensive to do the necessary alterations so they would put the school onto one site which is what the Head teacher and Governors had wanted for years. (Yes you have guessed it, the OSO was a Governor at the School by now!) So result! Every one was very happy. So the junior, the more modern bit of the School, was extended so the School was now just on one site.

The School was really good and we all enjoyed going there. As time went on I did find it more and more difficult to get around, but no one ever seemed to mind, or in fact really notice much. I had some really good friends and my increasing disability didn’t bother them, because, of course, of my devastatingly wonderful personality!

The main problem though, was the OSO, particularly at Christmas! You know how schools always like to do a show for all the parents and grandparents at Christmas? Well our school did some really fantastic shows, not just boring old nativities, but quite lavish productions which needed us to be dressed in fantastic costumes which of course all the mums made at home.

The OSO could only do shepherds!! Basically she couldn’t sew to save her life. She claimed she was allergic to needles and cotton and the very sight of them made her come out in a rash and throw up! She really was the limit. Fortunately her Mum (our Gran) was brilliant at sewing so she helped out. Mum was useless, she was the only mother who told her sons off for getting badges at cubs and scouts ‘cause it meant she would have to sew them on. When we went to Secondary school she had to sew the school badge onto out blazer pockets. We had to stand (or sit in my case because I was in a wheelchair by then) on the skew to make the badges look straight cause the OSO always sewed them on wonky.

When Roger and Alistair moved in 6th form much later, she was supposed to sew blue ribbon all round the edges of the blazer. Some hope!!

So back to the school Christmas plays, she could only do shepherds because all she had to do was put a tea towel round our heads and send us to school in our dressing gowns. It didn’t look very good when I was supposed to be a firework one year and another year Roger was Joseph in Joseph and his Amazing Technicolor Coat. The OSO thought he was Joseph, the virgin Mary’s other half! Yes, you’ve got it, she sent him with a tea towel!

Welcome to my world!

You see lots of people thought it was really hard for me having Muscular Dystrophy. In fact it was a piece of cake compared with having the OSO as a mother!

 

Monday, 19 November 2012

16


Feedback from my last couple of blogs says that you’re fed up/impressed with my name dropping!

So; I will get on with telling you about the more mundane things that happened in my life!

You may remember that due to a rather unpleasant brother in law of our nice farmer (the OSO saw him this morning, she pulled out her tongue at him behind his back, (the brother in law, not the farmer). Whenever will she grow up and act her age?!) stopped us from building our lovely bungalow. Well anyway, by now, we had moved out of our house ‘cause I was finding the stairs really hard.

Incidentally, another funny story from that I’d forgotten about, was when the OSO had been told she could claim Disability Living Allowance for me. So she had to get a doctor to come and assess me to see if I qualified. To be honest, I don’t think any of us was too keen on going ‘cap in hand’ as my dad called it, but money is money as they say.

So this Doc arrived and watched me walk, try to run and generally get around, then he wanted to see me go up and down stairs. Actually I thought I had done quite well, when he turned to my Mum and said, very scathingly

‘Is that as fast as he can go, I’ve got another assessment to go and do?’

Some people really are unbelievable, I mean that’s why he was there, because I couldn’t go any faster!

But back to my first bit of story. So we had moved out of the house and were renting a bungalow off some friends. The plan had been to live there whilst we were building the bungalow, but of course now that was not going to happen.


However things then took a positive turn in that Mum and Dad had looked at a particular bungalow ages before in the village that was for sale but they had dismissed it as it was far too expensive. Anyway the people selling it came to see Mum and Dad to say they needed to move quickly and would drop the sale price for us! Brill!

That’s what happened, a price was agreed upon and within a very short space of time, we had moved into the bungalow, which although it would need quite a lot of things doing to it, like widening doorways etc, it was pretty much fine.

We found out quite soon however while the people were so keen to move quickly  when the bailiffs came round and tried to seize some of our furniture!

The bungalow was great, and it was still in our village. Over the years, we built an extension and other building work but we loved it so it all worked out very well and we stayed there for 15 years.

Monday, 12 November 2012

15


Mum by this time had also got back to running. She and Dad had got involved with the Muscular Dystrophy Group as I have mentioned in another blog. Dad had ended up on the National Committee and had to go down to London quite often for meetings with the boss of M.D. the President, who at that time was Richard Attenborough (yes ‘Dicky’, he used to send us Christmas cards, how good was that?) and other committee members. The OSO, who as you know was not good at sitting down decided she would raise money for the group by running marathons and getting sponsored for doing so. Over the years she ran several, including three London and one New York marathon. I remember just before she went off to do the New York marathon, she raised about £20,000 from this one alone, we as a family were invited down the the NEC for the Muscular Dystrophy Group’s ‘Commit to get Fit Campaign’ press release.

 It’s a long story which I won’t bore you with, but basically the idea was that people around the country got themselves sponsored to get fit thus raising money for Muscular Dystrophy.  Sally Gunnell (who was the 400 metre hurdle Olympic gold medalist) and Roger Black (Olympic 400 metre runner) were also there as ‘fit’ celebrities. We had been invited I think because we were a good family to involve because we did a lot with the group and we gave a positive image to the wider public about the various aspects of living with Muscular Dystrophy. We got to sit with Sally and Roger who were both really nice. The OSO and Sally never stopped talking to each other about horses would you believe!

Anyway; at this press release the Chairman stood up and told all the press about the Campaign and how it worked, it was big, it was a national campaign so the group were hoping to raise lots of money from it. Then Sally Gunnell stood up and talked about how keen she was to support the Campaign and then Mum was invited to stand up and say how important it was to raise money to help families and raise money for research.

I could have told them that was not a good idea, give the OSO a stage and she’s off!! To be fair she started well and said all the right things, but then she went onto say that she wanted to show that families didn’t just receive money from others, but also raised money themselves to help the Group. ‘ Indeed’ she said she was just going off to run the New York marathon, THEN she said she had considered asking Sally Gunnell and Roger Black to go with her, but she was afraid that they wouldn’t be able to cope with the distance as Roger only ran 400 metres round a track and he was exhausted; and Sally, granted she jumped a few little hurdles on the way round the 400 metre track, but the  she too collapsed, so the OSO was worried that they wouldn’t be able to keep up with her! I ask you!

To be fair, it did raise a great laugh from the press audience and Sally and Roger seemed to take it very well. (it’s funny, but it never clicked until I wrote this blog that it’s strange that Sally Gunnell and Roger Black have the same names as one of my bros and my Mum) Well there you go.

Still the evening went well and the OSO did do the marathon and raise loads of money and she and Sally kept in contact for quite a while after that. So in the end, it all went very well and it did keep the OSO out of our hair for a while whilst she was in America!

Tuesday, 6 November 2012

14


I’ll come back to the housing thing in another blog, as you might imagine, there’s more to the story!

Meanwhile, Mum and Dad had got quite involved with the Muscular Dystrophy Group, which is a charitable organisation which funds research into all types of Muscular Dystrophy and supports the families affected by it. By this time they had found out that the closest specialist hospital was in Manchester, so we went there to get more help and information.

I was given exercises to do which were supposed to help me stay mobile, keep my muscles stretched, but mainly I think to keep the OSO thinking she was doing something to help! These exercises were pretty boring and I couldn’t see much point in doing them and in all honesty, I was too young to really take on board why it was important to do them.

The OSO then decided she was going to try and help make it easier for boys such as me to do these boring exercises; yes, you’ve guessed it! ( If you have been reading my previous blogs you will know by now that Mum was going to spring into action.) So she decided it would be a good idea to make a ‘fun’ video incorporating the exercises which would encourage boys to do them. So she spoke to our old friend Bernie Clifton to see if he and his Ostrich would help, of course he said yes.

Mum then talked to a couple of her work colleagues who were lecturers in the drama department.  She also set a meeting with lots of physiotherapists who worked with MD boys such as me to make sure they all agreed on the exercises (that took a bit of time I’m sure!)A script was then written which included Joey the clown and Bernie and Oswald the Ostrich. The video was to be called; wait for it, ‘Oswald’s Antics’ catchy title or what!

Joey was one of the drama students at the college and he was filmed with a story line doing the exercises with Oswald in a fun kind of way and to be fair it was pretty good.

The video was then made properly and voice overs and credits and all that kind of thing that the filmy, dramery people do and it was then sent round the country for MD boys to use.

It was a great success and proved to be very popular.

It sounds, in the telling, that this all happened very quickly, but as you may imagine, it took absolutely ages to sort out and plan and prepare, but it had the huge advantage of giving the OSO something positive to do for a while!!

Everyone was great about doing this and giving their time for free.

 

Bernie at the time was in a children’s television programme at the BBC called ‘Tricky Business’.

 Mum had an idea about making a children’s programme like a sort of Blue Peter that had people in it with disabilities. At that time, disability was still rather shoved into the background and people such as me were never seen on the tv as being ‘normal’. If you know what I mean?

Anyway, Bernie thought this was a great idea, so he fixed up a meeting with one of the top children’s tv producers at the BBC for him, Mum and the lecturer from college who had help make the ‘Oswald’s Antics’ video. (it does help when you have friends in high places!)

The OSO had a great day out in London at the Beeb! She was dead excited ‘cause when they went into the canteen for lunch with Bernie she sat at the next table to Dawn French and Jennifer Saunders! Bless!

The upshot was, that the producer really liked the idea of the programme, BUT thought that the viewing public were not yet ready to see people with disabilities in their front rooms on their tvs! Ah well, it was such a good idea, but a bit ahead of it’s time; ‘cause as you know, now there are loads of disabled people on and presenting tv programmes all the time.

At the time, the OSO was disappointed, but yes, you guessed it, she soon moved onto what she could do next!

Friday, 2 November 2012

13


We got back from holiday, and in the September I started at the great primary school where we were all to go. I really enjoyed it, it actually was great to be able to get away from my brothers and mother for a few hours a day, school was far less hectic than being at home.

The OSO carried on with trying to sort out getting planning permission for us to build a bungalow in a bit of the field which the farmer had kindly agreed to let us build on. Mum and Dad had to submit rough plans though nothing in detail at that moment in time they were just trying to get outline planning permission from the Local Authority. Once these plans had been submitted the Planning bods came out to have a look at the site to see if it was suitable. Sadly, they decided it was not a good place to build because of the access onto a bad bend in a busy road. So that was it! We wouldn’t be allowed to build there.

However, the farmer went away and did some thinking, he really was keen to help us, and came up with another plot of land he was prepared to sell us which was actually a better place, more accessible and The Local Authority planners gave us the thumbs up unofficially that we would be more likely to get planning permission. Into action went the OSO.

The first step was to agree a price with the farmer for the price of the plot if we did get planning permission to build. Mum’s father (my Granddad I called him Pompa) was a retired solicitor so felt it was best to agree a price at that stage because if planning permission was granted then the plot would potentially worth a lot more. Hope you followed that, anyway this was easily sorted out. The plot of land was actually designated as Green Belt, but was right next door to a line of bungalows so Mum and Dad went round to other people in other Counties in England who had been given permission to build a bungalow for someone who had disabilities. They had lots of meetings with their local councillor who was on the planning committee (he was really nice and helpful) and also met with other people (I’m not sure who to be honest, but they were always out and about trying to sort things out).

Eventually they got an architect to draw up some plans for a fantastic bungalow that would be able to meet all my needs as my disability got worse as well as being a great home for all of us and let us stay in the village where we lived.

All this took about a year I think, can’t remember exactly, but it was a long time ago! At last it was at a stage where Mum and Dad could put together the formal application to put to the Council to see if we could get planning permission to build. We had been informed that we had a very good chance of it all going through. I don’t know if you know how it works; but once an application has gone in then other people can see it and point out any objections they might have to the proposed build. We had some responses. One household said they didn’t want someone living near them who was in a wheelchair because that would ‘de-value their property’!

Another stated that they thought ‘people in wheelchairs shouldn’t live in the countryside, but should live in towns where there were better facilities’!

I know, you wouldn’t believe how people could say that would you?! I mean, most sensible people would realise that having me living near them could only increase the value of their property!

So time went on, but eventually we got to the weekend before the Planning Committee were due to decide on the Monday if we would get planning permission. The farmer came round to our house that weekend to say he was very sorry but he was now not in a position to let us build on his land! Apparently (unbeknown to us) that bit of land was jointly owned by him and his brother in law who had decided he didn’t want us to build there after all! Why he had only just decided that after nearly a year and a huge amount of time and money that Mum and Dad had put into the project was a mystery to us. The poor farmer was really upset, he had tried really hard to try and get his brother in law to change his mind, but to no avail. Mum went round to try and persuade him to let us build, or at the very least, explain why he had made this decision literally at the last moment. He was having non of it, so at the last hurdle we were let down all that time, energy, money and help from lots of lovely people all down the drain because of one person!

As you can imagine the OSO and Dad were very upset and angry, but there was nothing they could do, but accept they wouldn’t be able to build a bungalow that would have been great for us. It was a blow, but the OSO was already thinking of what else they would be able to do next!!

Wednesday, 31 October 2012

12


After all that and once Mum was feeling a bit better, Mum and Dad then decided it would be good to go away for a break in the summer holidays.

You may remember that mum regularly went horse riding, indeed she had me and Roger and Alistair up on ponies almost before we could walk. Of course at that stage we were too young to grumble! In actual fact we did enjoy it and Mum said it was good for my muscles to get them stretched! I mean, I’ve heard of some excuses, but really.

Anyway, as ever I’m off at another tangent, but it is linked, honest! The OSO rode a pony of a friend of hers called Zigga, (the pony not, not the friend). I’ve mentioned him in an earlier blog. Anyway the friend was, and still is, as matter of fact called Tracey. Tracey’s Dad was, and still is, Bernie Clifton. Those of my parent’s generation will remember him riding his Ostrich and hosting Crackerjack (CRACKERJACK!!) ask your parents if you’re too young to know what I’m going on about.

It just so happens that as Mum and Dad decided to go for a holiday in North Wales where we had often been in our relation’s cottage that Bernie was doing a summer season at Butlins in Pwehelli. He knew all of us very well, indeed Tracey is Al’s godmother so he said he would get us a day pass for Butlins and we could come and see him in his evening show whilst we were on holiday. Sounded like a plan.

So this is what we did, we had a great day round the pool and sampling all the rides and so on; all for free, courtesy of Bernie. In the evening we went to watch him in his show which was great. Well, it got to the point in the show where Bernie invited some children up on the stage with him. This often happens in shows like that as I’m sure you know. By pure chance (if you believe that you’re dafter than my Mum) Roger got invited up onto the stage with about four other children. Bernie got them singing ‘Old McDonald’s Farm I think which was very funny. He then got to the bit where he went round the children on the stage with him asking their names and such like. All went very well until he got to Roger! Bernie held the microphone up to Roger’s mouth and asked him what he was called. My bro (the idiot) said

‘But you know my name’

I ask you! As Bernie said later

‘Never work with children or animals!’

However, I don’t think anyone else in the audience clicked to the fact that Roger had dropped a clanger and anyway anybody that knew him would know he was pretty stupid so it all passed over ok I think. Les parents did have a good laugh about it with Bernie after the show,

We did have a great day though and it was the start of quite a lot of work which the OSO and Bernie went on to do together. More of that in another blog (I am trying to not get you too muddled!)

Monday, 29 October 2012

11


So it was all down to Alistair.

To be fair, I don’t suppose you could actually say it was totally his fault. It was probably more Mum’s for growing him so big and for her and Dad giving him the genes to make him emerge elephant sized!

As Mum was out running she realised that things weren’t as they should be, she felt as though most of her insides were falling out, so she went to see the Doc who told her that they were and her pelvic floor was more of a basement!

Her next visit was to a gynaecologist (I hope you’re impressed with all of my spellings? I’ll tell you what, I’ve checked spellings far more in the dictionary writing this blog than I have ever done!) The gynaecologist said, if they were wanting to have more children, he could stitch her up with a running stitch ( get it?) and hope her insides would all stay where they should, or she could have a hysterectomy (there I go again) and that would solve the basement problem. Honestly as if the OSO hadn’t got enough to contend with! Any road up she went home to discuss things with Dad.

 Originally they had wanted either two or four children and obviously now had three, but being realistic, they knew that now as things were as they were, they had better call it a day at three. Of course if they knew how great I was going to grow up to be, they would have stopped at me!

Mum then went back to see the specialist (got fed up of writing that long word) and told him as she had no womb for complaint (ha ha) she would go ahead with the operation. The good news was that they didn’t have to cut open her stomach the Doc said he could do it internally as Al had gouged had big enough path inside her to drive a loco through! (sorry, far too much detail).

Next stop was organising getting someone to help Dad and Jenny (nanny) look after the three of us, getting time off work and then the OSO was admitted to hospital ready to have her operation.

As things went, it was not too bad, though I don’t think Mum would agree with me. She’s NOT good with anaesthetics and for days after the op she kept being sick, also her catheter tube got blocked and so she got a bladder infection which to be honest didn’t help her humour. To say she was tetchy was putting it very mildly! The Doc gave her some strong pain killers in an effort to make her feel more comfy, but they made her hallucinate so that didn’t do much good either. The OSO hated being in hospital, she just wanted to get back home to us, very understandable really. We came to visit her lots and she got loads of other visitors, including some of her students, but all in all, she was very glad when the Doc said she could go home.

She was told that she had to be very careful and not lift anything heavier than a bag of sugar! This clearly was going to be difficult as Alistair was 10months old and obviously not walking, Roger was not yet three and I had not started school. To cap it all Jenny was poorly, I think looking after the three of us had worn her out, so she had gone back home to her Mum so the OSO was left to cope on  her own. She didn’t get much help from her parents as they were  elderly and lived quite a way away and Dad’s Mum was too frail to be able to help much. Dad, of course did his best and Mum’s friends did a lot to help, so between them they managed to get things sorted. Even so Mum had to go back into hospital a few months later for a repair job as she had done too much too soon; well what a surprise!

 

Thursday, 25 October 2012

10


So, back to the building of a bungalow.

 Sorry I keep skipping about a bit, but it’s just that so many things seemed to be happening at once and I’m trying to get it all down, but I do appreciate it might be a bit difficult to follow, BUT at least you’re only reading about it all going off, I had to live with it!

Anyway, you may remember Mum and Dad had decided the only option was to build a family bungalow, hopefully you have worked out by now, it was because they knew I would have to go into a wheelchair and as a result, stairs would be a bit of a problem!

We also wanted to stay in the village where we lived or at least near it, so the OSO started to look around for some land where it might be possible to build. She knew the area very well ‘cause she walked, ran and horse rode it a lot. She also knew an awful lot of people. Mum had a friend (well at least someone who put up with her!) who, together with her husband was building their own house, so Mum found out a lot from her about the pros and cons of doing that. Les parents decided it would definitely be the best option to build as it was a lot cheaper doing it that way.It would also mean they could incorporate all my very special needs into the plans as well as ensuring it was a family home for us all.

Mum got chatting to a local farmer she was friendly with. She had helped calve a cow who was having problems when she was out walking the dog one morning (the cow was having problems, not Mum. I ask you!) anyway the farmer was great. His wife had multiple sclerosis, so he was very sympathetic to the issues which disability can bring to a family and he said he was prepared to sell us a piece of land if we could get planning permission to build on it. So this was a big step in the right direction, but getting planning permission was not going to be easy. The plot of land was right next to existing bungalows, it was sort of on the edge of the development which was fine. However the only way to get access to the plot was off a fairly busy road and on a bad bend, which the Planning bods at the Council might not be too happy about.

Still it was worth a try.

Into action went the OSO. She got loads of books about planning a house. Don’t forget, it was pre internet and search engines and all the stuff that is now available on line. She talked to people on the council and got to know the local county councillor who turned out to be fantastic and a great source of help as to go about how to get planning permission to build a bungalow. Initially they did not need detailed plans, but just wanted to get outline permission so they could then go into more detail with regard as to what they planned to build.

However, shortly after getting started on with this the OSO was out running one day only to realise that things were perhaps not what they should be with her!

Oh hecky thump!

It turned out it was all Alistair’s fault.

 

 

 

 

 

Tuesday, 23 October 2012

9


So about the same time as all this stuff was going on with the house the OSO and Dad were looking at schools (actually it was mainly the OSO, Dad didn’t really do education he said that was one of Mum’s few areas of expertise!) and what would be right for me and Roger and Al.

Initially they had gone to see one of the main people in the education authority who dealt with provision for children with disabilities. His recommendation was that I should be sent away to a residential special school, as that, at that time was the norm. You will probably guess what kind of response that got from Mum and Dad, needless to say they didn’t go back to see him again!

I was already going to the local play school and Mum had told them about my M.D., and they were fine because they knew me and of course thought I was great, which I was of course! Anyway, at that stage you really wouldn’t have known I had M.D.’ cause I was pretty much the same as everyone else physically, and mentally, pretty sharp to say the least!

So the OSO decided they had better start looking at Primary Schools in the area and try and find the one that would suit all three of us the best. You may have gathered by now, that Mum and Dad were determined we three boys would all be treated exactly the same, I wasn’t to be allowed any special treatment (much to my disgust) and we just had to get on with being a family.

So Mum started with looking at the primary school in the village, which is where, had things been equal, we probably would have gone. Mum told them of my diagnosis, that I was physically, but not mentally disabled and that physically I would get worse. Though I was still a long way off going into a wheelchair, indeed there was a good chance I might get all the way through primary school without having to use a wheelchair.

The head teacher decided she was going to call an extraordinary Governor’s meeting to discuss the ‘issue’ and Mum was invited to attend. So of course, she went. At the meeting the Head and the Chair of Governors discussed what they were going to do about, as they said ’the problem’ ie. Me! I ask you. This kept going on, I think they only referred to me once by my own name. Needless to say Mum was NOT amused, to the point that in the end she stood and said in the middle of the meeting

‘Well it’s ok you won’t have to worry about ‘the problem’ at your school or either of his brothers, because non of them will be coming here’

Then she walked out.
 
That’s my girl!!
 
In the end, it all worked out very well, because after a search of the other local schools they chose a fantastic primary school where we all went and had a brilliant start to our education. More of that at a later date, as you can imagine, I have a lot of stories to tell about my time at primary school.

Friday, 19 October 2012

8


So, back to the looking for provisions for me as well as Mum starting running again, the two do eventually link together, I promise!

Initially Mum and Dad wanted to try and adapt our existing house. They had bought it just after they were married, which by then, was 12 years previously. When they had first acquired it everyone thought they were mad (you see, there’s that word again, it does keep cropping up!). It was an old stone built semi in great need of repair. Structurally it was ok in that the roof didn’t leak and it had walls, other than that there was not a lot more that could be said about it; unless of course, you took into account it’s great location and fantastic views. Mum always has liked a good view!

Anyway the kitchen just had a soil floor with a cold water tap hanging out of the wall, no hot water at all, it needed complete re-wiring, plumbing, decorating, new ceilings and some floors; well by now you get the picture! Trouble was they had spent all their money buying the place so there was no money left to pay any one to do the work for them. So, yes, you guessed it, they started to do it all themselves!

Every evening after work and weekends were spent renovating it. Dad was always the technical expert, doing the clever things like the wiring and plumbing, the OSO was the knocker down and crasher crump expert. Once, when she was pregnant with me, a friend came round and Mum was demolishing a wall. The friend remonstrated (posh word good for someone whose still in situ in the womb don’t you think?) that should Mum be knocking down walls in her state? Dad replied that it was fine because she was only using a lump hammer when she normally wielded a sledge hammer! The house took ages to complete, due to time and mainly money restrictions, indeed if you look at the photos of Roger’s christening you will see scaffolding up around the house!

Therefore, not unnaturally, Mum and Dad were not keen to leave the house they had spent so much time and effort get sorted the way they wanted it. They did loads of research and talked to lots of people and indeed ‘experts’ as to the kind of facilities, rooms etc I would need in the future as well as trying to keep in mind it was primarily to be family home for us all to live in. Lifts were considered, widening doors, hoists and so on all to make it suitable. They also visited other people’s homes who had done similar adaptations to see what worked and what didn’t. It was a big help that Mum had done so much work with people with disabilities so had a much better idea than most people of what I would need, also Dad was brilliant in understanding all the technicalities of such thing as ‘load bearing walls’ and ‘electrical requirements’. (it was as well he did  because it was way beyond Mum; bless!)

So reluctantly they came to the conclusion that they would have to move, preferably into a bungalow. They wanted to stay in the same village, but that was going to be tricky as there were only half a dozen bungalows in the village, which were either too small or too expensive. Bit of a problem! Never to be daunted by such trivial things, they decided the only option was to build their own bungalow, a cheaper way of doing it, in theory, and, a big bonus, they could build it how they wanted and for what I would need. You might have guessed this was not as straightforward as it sounded, well it never is!

 

Wednesday, 17 October 2012

7


We all ended up having a really nice holiday in Wales in our relation’s cottage which it was really great to be able to use. Mum and Dad used to go there before we three had arrived and we kept on going until I went into my wheelchair and I couldn’t climb up the steps. I will tell you more about our holidays there as time goes on. Alistair, on this holiday, was only about 6 weeks old and was still being fed by mum and he still kept making his silly breathing noises, but he seemed fine so nobody worried too much. It’s amazing when you are dealing with something like muscular dystrophy other things don’t seem half so significant!

When we got back from our holiday the OSO decided she ought to start running again, I mean she hadn’t got much else to do! I have not really explained before, to those of you who don’t know my Mum, that she is somewhat of an activeoholic if you know what I mean, she’s not so much got ants in her pants, but a whole colony of them in her knickers. She has always has always, and I suspect, will always be the same. Apparently when she was little my granddad used to say to her on frequent occasions

‘If you can sit still and keep quiet for 10 minutes then you can have a threepenny bit’ she never got the money, not once!

Anyway, to fill you in a little, she has always loved walking and running and playing sport she had always ridden horses, (she had me on my first ride on a pony when I was about 3 months old, on Zigga who belonged to a friend of my Mum, more of her later!)

So, the OSO decided if she got fit again after having Alistair then she could start running in marathons again(yes she had run in them before) and raise some money for the Muscular Dystrophy Group.

By this time both Mum and Dad had got involved with this group and wanted to do all that they could to help. I think, to be honest they both felt frustrated. Mum in particular,feeling that there was nothing they could do to stop me getting the disease (pretty obvious really as I already had it!) but they did want to help try and prevent other children getting it. At that time, the researchers had only just discovered what caused Duchenne Muscular Dystrophy, the lack of dystrophin and there was quite a good deal of hope that in the future; with a lot more research, they might actually work out how to make it and get it back into the muscle cells where it was needed. Like most charities, the Government did not put any money into medical research of the disease, so it was all down to fund raising to get the money to do it. So that’s what Mum and Dad decided they would do, though Dad drew the line at running, he was more of a committee and an organising kind of person!

They also started looking into the kinds of provision I would need as I got older and more physically weak in the form of housing, schools and aids and adaptations to help me get around more easily, but they were both VERY adamant that DMD would not take over all of our lives and that we were basically just a normal family who happened to have a child with DMD. I don’t know who they thought they were kidding, we NEVER would have been called a normal family, we were all barking mad!

Monday, 15 October 2012

6


Mum’s test for diabetes was not one of her most pleasant experiences. For one thing she was really worried about Alistair, she couldn’t be with him as he was upstairs lording it up in Special Baby Care (boy he really was something special!) in addition she said she felt like she had two mounds of setting concrete on her chest (you ladies who have fed their own babies will know how she felt I’m told)

Then the nurses said they would take some of her blood; I told you the medical profession are obsessed with taking blood; then she wasn’t allowed anything to eat or drink but water for 24 hours, then then they took more blood, then she had to drink this horrible thick VERY sweet sticky glucose drink (she hated that she said) then, you guessed it, they took more blood to see if she had absorbed the glucose correctly into her system.

So all this happened, and then surprise surprise, she wasn’t diabetic, Alistair was just an enormous baby ,he’s not exactly small to this day!

Anyway after about a day and a half Al was allowed back with the OSO as he could now breathe without a great big tube down his gullet. I reckon he just wanted some attention, again, something he still angles after.

As an aside, you remember I told you that Dad had met one of his mates visiting his very little grandson in the Special baby Care Unit? Well he (the little baby and Al the big baby) grew up to later play in the same rugby team together which I always thought was rather sweet (even though, I think, rugby is very much an over rated game)

So Mum was eventually allowed to take Ally home, so Mum and Dad ended up with three boys at home, me aged three and a quarter, Roger two and a half and Alistair a little (correction; big) baby. Quite a lot to deal with, so in a way my DMD was almost forgotten, because at that time, it didn’t really affect me that much and anyway, home life at that time was chaotic to say the least! Actually I don’t know why I said ‘at that time’ because, you will come to realise, chaos was the norm in our house!

The midwife used to come and visit every day for about a week I guess to weigh the hulk called Alistair to make sure he was growing ok! Mum used to keep the hoover out with a duster draped over the handle to make it look like she was just about to do some housework. She never did, what a joke!

Mum was still off work at this time on maternity leave, but she knew she would have to go back to work soonish on a job share basis. Help would therefore be needed in looking after the three of us for the days that Mum was working. In the end they decided to employ a nanny who would live in with us. They felt this was this best way of doing it as it was cheaper than using a child minder and they both felt it was a lot better because we would all be able to stay at home and looked after there and not have to be carted off to someone else every morning the OSO was working. So that was what was done, and Jenny came to live with us (she went back to her own home at weekends) at it all worked out really well, she fitted in great and even learnt how to cope with the OSO which was a major achievement in itself! She became part of the mad, mad family and stayed with us right up to the time that Alistair started school.

But, back to chaotic home (as ever, I digress). Al was born in the May and Mum decided to go back to work (lecturing at the local college) in June. Yes, this was a little early, but she had a cunning plan! By the end of June most of the students had finished so the lecturers were just in doing admin and such like until they too finished in July. This meant that the college crèche (a new innovation) was empty as there were non of the student’s babies in there! Anyway it meant Mum could take Ally into work with her and put him in the crèche and when he needed a feed from her (which was very often as he was very greedy) the crèche staff called her and she went down to feed him! Most of you will have realised the reason why she went to all that trouble was so they her pay started again and she was only in work for a couple of weeks before she broke up for the 6 week holidays. I told you it was a cunning plan!!

When the holidays came Mum and Dad decided we all needed a break so off we all went to a relative’s lovely cottage in Wales.

Saturday, 13 October 2012

5


So Mum went into hospital and started the process of trying the get ‘blob mark 3’ out. She pushed and she pushed, but still he didn’t come out.

‘Push harder’ said the eminent doc.

‘If you think you can do any better, you have a go’ was Mum’s ‘considered reply!

It might be worth mentioning at this point that the OSO had plenty of experience in pushing out recalcitrant (look it up!) offspring; Me! Mum had a real job getting me out. I got well and truly stuck when I was being born. At one point (so I’m told, ‘cause in honesty, I don’t remember a lot) that the consultant was trying to pull me out with the help of a couple of nurses, Dad and another nurse were hanging onto the bed to stop it shooting across the floor as he pulled and then in walked the gorgeous paediatrician (Mum’s words, not mine) who could then only see a certain part of Mum’s anatomy (don’t ask!) and then said to her

‘I know you from somewhere don’t I?

Seemingly the whole room erupted in laughter at that and eventually I was born, much to Mum’s relief.

Anyway, back to Alistair’s birth. Well I couldn’t let him steal all the thunder! He arrived, all by the OSO’s efforts, she is very determined. All 10lbs 5oz of him.

What most of you won’t know is that Mum is not exactly the largest lady in the world. She’s 5’ 2” on a good day and weighs around 8st 7lbs, so Alistair, pro rata was pretty big.

So the first problem was that he couldn’t breathe properly, he get making these really weird sounds (he still makes them today, though it’s usually when he’s had too much to drink). So the Docs decided to stick a tube down his throat to hold open his airway and take him up to the Special Baby Care Unit. It turned out he had a floppy soft palette which kept dropping down and blocking his airway, his body was too big for the reflexes of a new born baby (I ask you!). So there he is with all these tiny premature babies and Al, the incredible hulk. They couldn’t find any clothes big enough for him it really was a joke.

Naturally enough, Mum and Dad were rather worried at this stage, obviously they were upset enough about me without having another son to worry about. The only son not to cause them any bother at the moment was Roger, as you will find out later, this happy state of affairs didn’t last for long! Roger always wanted to make his presence felt and he hasn’t changed any to this day!!

Of course Dad had to know someone (he always does, it’s because he’s so old and has been around for such a long time it’s inevitable he bumps into someone he knows) Anyway, up in the Special Baby Care Unit he bangs into one of his old rugby playing friends, who it turns out, is visiting his very small and premature grandson! Dad was visiting his ginormous son! (not sure how you spell that) Well I told you he was old!!

So Al was left up bulging out of his cot, Mum was back on the ward, not happy, only to be told, because she had had such a big baby they were going to test to see if she had got diabetes! I ask you it was one thing after another.

 

Thursday, 11 October 2012

4


So after that, it was all rather weird for a time, The OSO did a lot of reading about DMD and other such boring research about what was likely to happen to me. Daft things like Mum remembers what she got for us at Sainsburys to eat that weekend( once she was let out of bed) Slow roast brisket of beef; how bizarre is that!

A week later they went to see a genetics research chappie, very clever, called (oh I suppose I’d better not tell you his actual name) anyhow he was really nice and he and Mum got into deep discussion of how my mutation could have occurred, stuff about gonadal mosaicism, or some such term. Suffice it to say that they had to wake Dad up at the end of their conversation. The OSO swears to this day, that it had something to do with Chenobyl going bang when she was very early in her pregnancy with me. I always maintain it was her fault for being a witch. She said I just mucked up the perfectly good genes she gave me. We have always agreed to differ!

After that Mum had to go for a very detailed scan at ANOTHER hospital. She had to go with a full bladder and then was kept waiting before they did the scan! Flipping heck; she was not a happy bunny. All in all they decided they were 90% certain that the baby boy was ok and that was as far as they were going to get for a guarantee. So Alistair, or baby Frank as to what he became known as was here to stay.

Then things largely carried on as normal, if that is what you could call our family life! Mum got on with all the millions of things she always did and Dad carried on working and being calm and level which is what he always did best. I, really didn’t know things were any different and carried on growing up, with Roger always a bit physically faster than me even though he was 15 months younger than me. Though it has to be said that he was a lot fatter than me, he was always know as Roger the podger which he certainly was!

Obviously all the family were upset, my two Grandmothers and Grandad and my Aunty tried their best to rally round, but at this stage there wasn’t anything they could do. The great thing was that neither the OSO or Dad were scared about disability as such.You have to remember attitudes were a lot different then (not the much more positive ideas about disability which we have now). Mum and Dad had two friends with multiple sclerosis and of course you will remember Mum had worked a lot with people with all kinds of disabilities, so it was generally very lucky that they were not phased about having a son with a disability. I think what they found hardest was knowing that I would not live very long and over my life time I would just get physically worse and worse and there was nothing that they could do about it. Mum much later told one of her friends it was like being told every day that your child had been in an accident and was going to die. But enough of that! Mum, as you probably have realised by now, was a great dooer, so that’s what she did. Claire is one of Mum’s bestest friends and she always maintained that the OSO was like an electric whisk, whilst she, Claire was like a spoon! I always thought that was a brilliant analogy and anyone who knew the pair of them would say that was true.

So, Mum carried on growing Alistair and he grew and grew, just like the very hungry caterpillar until the following May when he decided it was time he emerged into the world.

 

Monday, 8 October 2012

3


Monday morning saw Mum and Dad in the waiting room of one of the Sheffield hospitals for mum to have a CVS, I won’t go into all the gory details, but basically it was a test to see if the baby Mum was pregnant with also had DMD like me and if it had, what would they do? Mum, having worked with DMD boys in their teens had no illusions as to the effects of DMD she wasn’t wearing rose coloured spectacles as they say! Dad wasn’t sure, so they decided to go ahead with the test anyway. Also they wanted to try again to get some blood out of Mum to see if she was actually a carrier of DMD, or if I was a mutation (sounds like something out of Alien!) Actually I came to realise over the following years that people in hospitals are obsessed with sticking needles in you and taking out whole armfuls of blood; they just do it by default!

Anyhow, the test was done, and they actually got some blood out of Mum. Mum then had to go back home, go to bed, because the CVS could have caused a spontaneous abortion, and wait for the results. You will come to realise, if you carry on reading my blog, that patience is certainly NOT one of Mum’s virtues!
 
So, basically that really was agony for Mum.

It has just dawned on me that I have not actually explained who the Odd Socked Octopus is! I guess, however, that most of you will have already realised; but for those of you who struggle when one of their two brain cells has gone walkabout. The Odd Socked Octopus is the name we all came to refer to my Mum by. An octopus, because she always had loads of things on the go at the same time, work, children, her parents and mother in law, animals, keeping fit, gardening, being on lots of committees and so on and on, she was NEVER still.

Odd socked, because, as a family, we very rarely had a matching pair of socks! Our washing machine used to eat them! (Mum once actually rang Dad up at work, very excited, because a whole pair of his socks had come out of the washing machine) Indeed Roger came to take a perverse pride (he could be very perverse) in always wearing odd socks for his rugby matches even though when he was captaining Derbyshire they took a dim view of it.

Oh heck, as usual, I’ve gone off on a tangent! Any road up, so the OSO (work it out!) had to sit in bed and wait to find out if the baby was affected and if she was a carrier. The news came through, four agonising days later, that the baby was a boy, but was not affected, and that Mum was not a carrier of DMD.

 I should also point out, that a couple of weeks earlier, Mum had a scan to check the baby, to be told it was twins. She was more upset I think because she had just sold one of the two cots they had, thinking they would no longer need them! However, going back for another scan a couple of weeks later, there was only one. I reckon as Alistair (he was the baby) who was born the following May weighing ten pounds five ounces actually ate the other one and that it’s still probably there inside him to this day! But I will tell you more about that another time.

Friday, 5 October 2012

2


So, it’s Thursday 26th October, Mum’s birthday, whoopee and there we both are in the centre’s waiting room all set to get on with the next barrage of tests.

Then the main Doc appeared and asked us to go straight into his room before we did anything else. Oh heck!

So in we both trooped and  the Doc asked Mum if Dad was around and could be fetched as he had some news. (let’s face it he wasn’t going to tell us we had won the pools!) Mum said no, as Dad worked in Sheffield, the best part of an hour away, so the Doc had better tell us and, as she said, she had a pretty good idea what he was going to tell us so he may as well get on with it!

So he told us the blood tests he had done yesterday showed I had DMD, which basically meant that my muscles were rubbish.This was because I was missing a gene on my X chromosome which should have made dystrophin which was what made  healthy muscles, so basically my muscles would get worse and worse. He said I would be in a wheelchair by about 10 years then my arms wouldn’t work and eventually it would get to my muscles that made me breathe so I wouldn’t be able to! So my life expectancy was late teens to early twenties.

 To be quite honest I can’t remember all this, because, as you may remember, I was only 2 years and 11 months. However, as you may expect, my Mum took it ALL in, though she had actually guessed as much from reading her text books the previous evening and what she already knew; ironically she had worked with boys with DMD.

It wasn’t exactly the birthday surprise she had hoped for!

DMD is most often passed from mother to son, but there was no history of it in Mum’s family, but it could be there was a fair chance that any other boys in the family could also have it.

Mum then told the Doc she had another younger son at home (Roger) and she was 11 weeks pregnant (as yet unknown). It has to be said the Doc, who up until then had been trying to keep a calm and sympathetic stance on the news of my Dystrophy, looked a bit shocked; poor man!

So, it was decided that I would stay at the centre with a play person (not sure what that meant, but she was nice and I got orange juice and biscuits so not all bad) Mum was going home to get Roger who would need to be tested and in the meantime hopefully  Dad would arrive from Sheffield.

So, about an hour later, the Dracula nurse had got blood out of Roger, tried to get it out of Mum, but her veins weren’t co-operating (stress the nurse said, I think she was just being mean and didn’t want to part with any!) Roger’s blood sample was then couriered by a motor bike to be tested; talk about flash! So hopefully his results would be back later that day. Mum had to go for a CVS test at one of the hospitals in Sheffield on the following Monday morning to see if the baby she was carrying was a boy and if it too was affected. If it was they could choose to abort it and that needed to be decided quickly because once Mum got to 12 weeks of pregnancy an abortion would be more unpleasant. Well I hope you followed all that!

So Mum and Dad, not surprisingly, were a bit at sea without a lifeboat, so like you do, they decided we might as well go to the park and playground in Bakewell with me and Roger. We were well up for that ‘cause it’s a great playground.

So after that it was back home and wait for the phone call about my little Bro.This eventually arrived and we found out that Roger wasn’t affected. To be honest, I could have told them not to bother with the tests because it was pretty obvious that Roger was ok, because all along it was because he was physically better than me that alerted Mum to the fact that something wasn’t right physically with me. BUT I wasn’t going to tell them that because I had been stuck with a needle, so Roger could suffer too!

Wednesday, 3 October 2012

1


My Mum was told I had Duchenne Muscular Dystrophy on 26th October 1989,

She will always remember that date, not only because she had just found out that I was terminally ill, but also because it was her 35th birthday and she had been planning on going out with my Dad that evening for a meal; so my diagnosis rather put the dampers on that!

To say the proverbial hit the fan that day was putting it mildly for all sorts of reasons. I was 2years and 11 months of age, my brother Roger was at home aged 1year 8 months and my Mum was nearly 3 months pregnant with another baby.

Mum and Dad had been married for 8 years before I was born, then they had me (forgot to say I’m Martin ) 15 months later they had Roger and then Mum got pregnant again with a third child, so it was 3 children under 3 and a quarter years! Talk about MAD, but as you will find out if you keep on reading my blog; Mum is basically barking mad and Dad tends to generally go along with her.

 Always wanting an easy life!

So, back to my diagnosis; Duchenne Muscular Dystrophy (or DMD as I shall call it) only affects boys, I won’t bore you with the genetics. So as my Mum had another boy at home and was pregnant with who knows what it was a bit tricky all round.

Perhaps I’m getting a bit ahead of myself so I shall go back a bit.

Mum ended up getting this rather iffy news, because, as usual she couldn’t let things lie. Roger, my younger brother by 15 months clearly was ahead of me physically (not mentally I hasten to add) he found walking, climbing, running etc easier than I did. Mum was worried about this. She was a lecturer by trade and worked with and taught others about physical disability; in fact she had done her dissertation for her degree on attitudes towards disability and you have to remember that she is VERY old, so this was all very different than it is today, no Paralympics and positive attitudes. So anyway, she knew lots about disability and really felt things weren’t right with me.

So she pushed and pushed at the doctors (you will come to realise that my Mum got very good at this!) until eventually she got an appointment for me at the local Child Development Centre. I had to go for 2 days of checks for everything, top to toe to see if they could find if anything was going on.

On the first day, Wednesday 25th October we went in to see the main Doctor who was going to oversee all the tests and the first one was with him!

Just about the first thing he did was to get me to lie down and then get up, which I did in my usual fashion which I thought was quite fast, but it seemed to worry the Doc who promptly announced that he wanted to take a blood sample from me and send it off for tests; at this Mum got worried as she smelt a rat (you will find out as we go along that she really is a bit of a witch!). Any how a nurse was summoned and asked to stick a needle in my arm and get some of the red stuff out of me, the nurse remonstrated saying she didn’t like to take blood saying it would upset me and I then would not be happy to do the rest of the tests that were in store for me over the next couple of days. I was with her! I didn’t fancy the idea of being jabbed with a needle, but Doc was having none of it; so the deed was done. I was VERY brave and then carried on with the rest of the tests; hearing, cognitive skills (I was dead good at those) drawing etc. until at the end of the afternoon we were told we could go home (phew) and come back next day for the rest of the tests.

Home and cheesy scrambled eggs for tea (yum). Mum spent a lot of the evening looking in her college books on disability (google hadn’t been invented yet, I told you she is very old!)

So next day on her 35th birthday there we were back at The Child Development Centre.