Mick’s Story

Mick Swales has Muscular Dystrophy and visits the Living Well Service at Arthur Rank Hospice Charity.

He always makes time to go on one of the Medimotion bikes in the gym, when he visits, and kindly shared his story and why this is important to him.

When were you first diagnosed with Muscular Dystrophy?

When I found out I had Muscular Dystrophy I was 32 years old at the time. One Christmas I’d just collapsed, I’d got no effort or anything, so I stayed in bed over Christmas for three days and then when I got up I felt a bit better.

I went to a physio, an ex-Leicester City Football Club Physio, in Grange Road. He looked at me and could see a physical disability on my right shoulder and said, ‘You ought to go and see your doctor’. I knew I had that because the first bloke who measured me up for my first ever suit reckoned my shoulder was off.

Also, on the way home from [cycling] club one evening, which we rode every Sunday, we stopped for tea in the pub and finished up with a pint. Before we finally went home we started playing darts. I was throwing 180’s and all of a sudden, I started throwing one in the wall. I was loosing control in my right shoulder.

Diagnosis

They referred me to Addenbrookes to Neurology, and they sent me for a muscle biopsy. They took this muscle biopsy and told me I’d got Facioscapulohumeral Muscular Dystrophy (FSHD) which my mother probably had given me. She’d been troubled for a long time with it, eventually she was in a wheelchair although she wasn’t diagnosed until I was – she was 61 years old. She’d given it to me and her mother had given it to her.

Some Muscular Dystrophy’s have a 50% chance of the mothers passing it to their sons. Usually the boys didn’t get beyond about 30 years old [depending on the type of Muscular Dystrophy]. My mum lived to 90 years old and I’m 84 years old.

How long have you been coming the Living Well Service?

Oh years! It’s been so long now.

What do you like about it?

The people you’re with and what they offer you.

I’ve still got an interest because one of the machines [Medimotion Bikes] in there [the gym], it’s got a film on it, and they [the Clinical staff] went and put it on for me. I was riding on this bit of road that I suddenly realised I knew because it looked like it was set in South Africa. There was one of the bits of road which they call the ‘Garden Route’ from Johannesburg to Cape Town. I’d been on that bit of road on my bike physically on there [and now I felt like I was riding it on the bike in the gym at the Hospice].

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Mick’s Cycling Stories

When it all started

I have spent most of my life on a bike – and my Mum and Dad before me. She wasn’t a big fan of cycling but that’s all we had in those days [to get around]. My mum would think nothing of cycling from Cambridge to St Neots, where my Dad was from. I was born in 1940 and I [believe] I was the first child in Cambridge to be put in a gas mask. My Mum was still cycling only three days before I was born!

As soon as I was big enough, from about 2-3 years old, I was carried on the kiddie’s seat on the front of my Mum’s bike. I would sit there swinging away, singing ‘the White Cliffs of Dover’ kicking my feet and getting rid of my woolen booties.

I used to live in Catharine Street in Cambridge – one of the houses on Mill Road which was built in the 1890s when they built the railway there. They were that rough and ready in places and they were built by the railway workers. You could buy the house on the market for £400. If you were a sitting tenant, you could buy it for £200 but my dad couldn’t afford to buy it. He never made enough money to own a car, learn to drive or buy his own house but you could give him a piece of leather and he could turn it into anything.

He was a harness maker [for horses], but he was a leather worker, really. At one time he was making footballs. They used to have a rubber bladder in them, and he laced them up and made hundreds of them in nine or ten different patterns.

When my brother was at grammar school he played rugby. My father bought a bladder home and made panels from leather he nicked from work and made a proper leather rugby ball for my brother to take to school. It was that good that the school pinched it off him because it was better than anything they’d bought!

How did you get interested in cycling?

At seven years old I learned to ride a bike – it took me a long time to learn. My dad pushed me down Catharine Street and told me to get off by swinging my leg over the seat but I daren’t and I ended up running into the back of the only parked car in Catharine Street and fell off.

At 14 years old, me and a lad at school were into cycling but they wouldn’t let us do cycling while we were at school. We had to play rugby and hockey because it was a grammar school.

I couldn’t play rugby with glasses so we asked them if we could use our bikes to train around the 440-yard running track. They wouldn’t let us because they said they weren’t insured for us to do that, and we’d only tear off and go home.

When the war stopped and when stuff finally came onto the market again, I bought myself my first ever bike to ride to school, to work [my paper round] and to do things. As I say, I just did it because that was the easy way to get around. I’d get my bike out to ride up to the sweet shop halfway up Catharine Street. I used a bike the same way that everyone uses a car.

I remember a lad and me cycling the 60 mile trip to Snetterton [in Norfolk[ and back, along the Norwich Road. On the way back I was saddle sore and walked four miles because it was painful to get on the bike. My friend kept encouraging me to get back on the bike because he wanted to get home!

Racing Days

I used to have a paper round and one of the women who worked there belonged to the Cyclist Touring Club and told me about it, so I started racing with the Eastern Road Cambridge Touring Club. At aged 14 years old I rode my first 25 mile time trial, although you weren’t supposed to ride a time trial at that age as that could stunt my growth, so they said.

When we were racing, in the old days with cycling, we used to have a sports meeting at Cambridge City Football Club every August. There were all sorts of athletics, cycle racing, 440 yard, 220 yard sprint races and five mile, long distance track races.

When we were doing time trials, we rode 10 miles, 25 miles and 50 miles time trials all through the summer. In the winter, when it was darker earlier, we did 10 miles as a warm up. St Neots Road is part of my life basically. All the times I was racing, I was enjoying it.

When Cambridge twinned [with Heidelberg in Southern Germany], four of us rode two tandems across Belgium to get to Germany. Ten days before I did it, I’d fractured my left thumb but I rode across Holland with a plaster in the pouring rain. I was told ‘Don’t get it wet and then come back again in a couple of weeks’.

When we rode through Diss, we were the British Cycling Federation (BCF) East Anglian Team Pursuit Champions. Like they do on hard tracks in the Olympics – we were doing it on grass tracks in the open air.

For four years me, my brother and another lad in Diss were regularly the BCF champions in East Anglia.

Cirencester

Then I went to Cirencester and started riding with ‘Cirencester Phoenix’. I was working for Cheltenham Rural District Council. I was a Junior Clerk so I’d have been the first one there who opened up in the mornings and I cycled the 14 miles out to get there. I was the last one to leave because I had to take the post to the post office. They didn’t let me have the time off from work to do it – I had to wait until the work was finished, go into the post office, do the post, then bike the 14 miles home. If I’d got anything going on in the evening, I’d get home, have my main meal, change and get dressed up for wherever I was going.

One night I had plans to go out with my girlfriend to the cinema [and didn’t want to be late for her]. As the bus passed me between Cheltenham and Cirencester they clocked me. I was doing 40 miles an hour – the whole way home. Now if I’d done that [speed] in a 25-mile time trial I would’ve been the National champion.

The aim of the 25-mile time trial was getting under the hour – doing 25 miles in less than 60 minutes. I never quite managed that [in a time trial]. I did five to ten different time trials to try to get it but because I’ve got Muscular Dystrophy it wasn’t really helping – but I didn’t know that [I had that] at the time. In one of the time trials, I had to stop at the red light for 20 seconds and watched the clock ticking by – I missed the Diss Club 50 miles record by nine seconds.

The night before my 12 hour time trial, I screwed a bottle cage onto my racing bike – which didn’t normally have a bottle cage, it was a lightweight one. That inadvertently screwed the gear cables that went down the frame to the gears. Screws ended up at the tube so I had to stop, undo the bottle cage so I could change gear in it and doing that, I felt my back twist.

I rode the next 10 hours with a slipped disc. You end up on a finishing circuit. There’s a timer every mile to work out how far you’ve gone on the finishing circuit, and I did 222 miles. I rode for ten hours in pain and I was roaring round the finishing circuit.

When I lived in Cirencester we regularly met the Swindon Wheelers Cycling Club, in which there was a man named Dennis White who was the first man to do 24 hours at over 20 miles an hour, 480 miles. They’d never heard of him, and they all said it was a freak, so he went back the next year and did 484 miles in 24 hours.

Diss

We used to ride a lot in Diss so I joined a Diss Club because we’d been riding over there every weekend. I rode in the West Suffolk Wheelers 12 hours event. In which one cyclist, John B, passed me at 80 miles coming out of Bury St Edmunds up this big hill. [He said] ‘Long, old road, innit, mate?’ as he passed me. I caught him up again on the finishing circuit when he’d gone to the wall, and he was weaving side to side on the road ‘cause he hadn’t got the strength to ride in a straight line.  So I’m on the finishing circuit again and as I passed him I said. ‘Long, old road, innit, John?’ So, I passed him, beat him.

Then round the back of the circuit, I caught up with another lad Bill I, from the Cambridge Club. He was the one who beat me when I had a slipped disc. He’d just been stung by a wasp and was sitting there with his mate who was helping him. He pulled this wasp from him and the look on his face when I went past him – because he was winning the event and when I passed him, he wasn’t – I was. I had to get three minutes in front of him to beat him, and as I finished, my time ran out, he caught me and he did 248 miles and I did 247 miles in 12 hours. That was almost competition record in those days.

Anyway, they reported it in the Cambridge News for Bill that he had won the West Suffolk Wheel. They reported that surprise of the day was I’d beaten my previous best of 222 miles. Well, that was wrong, I’d done 226 miles. I got a better write-up in the Cambridge paper than he did, and I wasn’t riding for the Cambridge Club.

I saw Reg Harris race the last two years as a 65-year-old veteran. We were at the National Track meeting in Halesowen in Birmingham. We were riding the individual pursuit event, my brother, me, and another lad from Diss. We’d never ridden hard track before. We didn’t know what we were doing so we never came anywhere. Basically we hadn’t got the right experience or equipment.

While we were there, Reg Harris was riding his second to last final sprint and the bloke he rode against, Trevor B, didn’t reckon Harris would beat him. Harris took him. He didn’t know what had hit him.

Reg Harris reckoned he could accelerate from 10 miles an hour to 40 miles an hour in four pedal revs. He had evacuated from the Army because he’d been injured in tanks and they reckoned he wouldn’t ride a bike again. He came back at 65 years old and did it all again.

Tricycle

After my diagnosis, I was already used to riding tricycles, so I carried on with those and I won their over 40s handicap award that year. 2 hours 20 minutes for a 50 mile race. Yeah, I’ve done all sorts of things.

I was at a club dinner once and I’d fallen off a couple of weeks before, turned the tricycle over, put 27 stitches in a scalp wound. At this dinner we were on the top table because my friend had won an award.

When we turned up [I was delighted to discover that] one of the guests sitting on the top table, next to me, was a man named Ray Booty. He was the first man to ride 100 miles in under four hours.

I’ve done thousands of miles [cycling] and been halfway round the world – New Zealand, South Africa, France, Belgium, Holland, Morocco, the Atlas Mountains, Spain, Italy, Germany, Gibraltar. I’ve done all sorts. Things that have happened you wouldn’t believe!

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