I was born in 1959 and early in life I started walking on my toes so much so that my mother was worried so aged 7 I had an operation to lengthen the tendon on my left ankle and then had regular physiotherapy at the local health clinic to try and keep it lengthened
Later on at school at the age of 10 I forgot my games kit so had to sit at the side of the football pitch I got cramp and I couldn’t straighten my knees so the teacher carried me back to the school. Maybe the same year or later we went out for a day to Southport there was a fun fair there and they had something called the Astroglide you know the thing it’s a big slide with a few smallish humps you go up the steps at the side and then slide down on a mat. The mat is sort of folded up over your knees you slide into it like a giant slipper. Well I got down okay but my legs tightened and I couldn’t straighten them to walk. At the age of 11 I started at senior school ,every year they had a cross country that every pupil takes part in , I got cramp after ½ mile and sat down I then found I couldn’t straighten my legs the teacher came and took me back to school. I got a lot of cramps around that time but those 3 were the worst. I was never any good at sport but at the age of 15 I managed to walk round the cross country course I was last but that was my best ever position. At school when we played team sports the teacher appointed two captains and they picked the players taking turns to choose I was never picked till last for any team. I went on holiday with my family one year and walked round a rocky cove I kept falling over and my parents kept saying don’t be so soft get a move on .I know they didn’t know I had a real problem then –many of you I am sure may be able to relate to this .
I left school at 16 with grade one CSE’s in maths and in Physics and went to Technical college to learn Radio, TV and electronics. The one thing about that time was TVs still had valves so what I learnt was rapidly becoming obsolete. We had 90mins a week set aside for sport and we played 5 a side soccer indoors, I always got put in goal and as there was a thick rubber mat around the goal area I could dive. I was alright in goals well of a sort I could try and stop it with my legs and I could dive fast as I was good at falling over!
I got my first proper job for 2 weeks in the summer at a soft drinks factory packing cans onto pallets I could still lift things at that time. I was asked to take a pack of cans upstairs but it took a little lot longer than most people would take and I struggled a little. I went back to college after the summer and the following year I was taken on by a test equipment repair centre in Astley a couple of miles from where I lived . I still carried on my studies taking electronics part time, this I did for the next 4 years and as the junior member I had the task of brewing the tea for those doing overtime. At the age of 21 I started to have difficulty taking the tray of cups upstairs and remember starting to lean against the rail for support with my arm. I did not do too well at work and after 4 years was made redundant –a nice way of saying your fired but they gave me a reference . I took this badly and was unemployed for 3 years but in the1981 I bought a Sinclair ZX81 computer with a 16k Ram pack! . In those days you had to use a tape player to load games or type them in as I was a bit short of money I bought a lot of magazines and typed the programs in. I soon started altering some programs as they were written in basic and a couple of years later bought a Dragon 32 computer and carried on doing the same.
My brother in law got me a job at a window manufacturers where he work they had a computer for working sizes out for manufacture of glass etc. A year or so into working there I started to become more wobbly on my feet and I had by that time lost most of the outside upper thick muscles on both legs. I never remember the muscle going as it happened so slowly I just remember they were not there when I was 27 but they were there when I was 21 . A director of the firm suggested I see a specialist at the local hospital but it was not his field of practice but he suggested moving muscle from the back of my legs to help my knees so I didn’t bother with him anymore. I did start having some physiotherapy at the local hospital which consisted of a set of exercises which included putting a ball under the ankle and moving the foot in a circle while on the ball. Eventually I got a proper specialist and he could not make up his mind what was wrong ,one doctor I heard say it may be Limb Girdle but nothing was done. I continued in work at the same firm for 8 years until they over expanded –a new factory with expensive machinery and new delivery vans and then work dropped off massively and the were declared insolvent and I was made redundant.
I was good at computers and by that time if I had a manual with dimensions of profile for a window system I could setup a computer to calculate sizes. I had even written a couple of programs for the company I just left for Job planning with manufacturing limits for each week and had written one for a rival company This lead me to get a position at the company I am now, I can now program in Visual Basic and 6 years back took a HND in computers.
In 1996 I finally bought my own place a bungalow and it was a few months later I was finally diagnosed as having Becker md (and it only took 15 years for them to find out what I had).I had no problem with getting a mortgage but I was turned down when I applied for redundancy protection insurance at that time.
I have problems walking and steps are extremely hard to climb but I can walk 2 ½ miles easily with a stick maybe even 4 miles, lifting anything from the floor is very hard for me I usually lift things onto a chair then straighten myself up and then lift the item off the chair.
I volunteered with maybe 8 others a couple of years back to help setup a support group, most dropped out but I went ahead with Launching Becker United as a support group in march 2005. There are a couple of guys who are still with me but as it is Internet based at the moment I run the website by myself .Some of you already have and do but all of you can be a part of the group and can help me by sending me stories to add to the site.