You can do it!

Joan Anderton talks about her experience living with Limb Girdle muscular dystrophy.

The year was 1953 and I was in the first year of the Infant School coming up to six years of age and it was my first sports day. I was first in the line of a relay race and I remember being in the yellow team standing in line wearing a yellow band.

The whistle blew and I was trying to run but nothing happened. A teacher tried to encourage me, "you can do it" she said and gently pushed me but I fell over and cried.

That was my first recollection of being different from other children.

Memories then become a bit vague but I can remember lots of hospital appointments and physiotherapy and a diagnosis of a form of polio being told to my parents.

The weakness in my arms and legs became worse and my next clear memory is being admitted to The Maida Vale Hospital for Nervous Diseases in London at the age of 12. I can remember having lots of tests which to a 12 year old, seemed like torture – I had needles inserted in my muscles, a lumber puncture and a muscle biopsy. I hated every minute of that stay and due to the fact that our home was in Surrey, financial and work commitments and the difficulty of the journey meant my parents were only able to visit me once. When my parents came to collect me, I remember being in a room with them and several Doctors and then remember my mum and dad both being upset. I know I couldn’t understand why at the time, I was just so glad to be going home. But later on in my life, I realised my parents had been informed I had muscular dystrophy – a condition that had no cure and they thought a very short life expectancy.

Writing this now, it seems so funny because medical science has dramatically improved but I will continue with my story…

After the hospital stay, I returned to school but managing to get up the stairs and walking became increasingly impossible. I began to use a wheelchair and remember having to have the wheelchair manually lifted up the stairs for some lessons.

My dad became very involved with the Reigate branch of the Muscular Dystrophy Group but the one thing I remember is that my parents would never talk to me about my condition – they just encouraged me and never led me to believe I would not get better. I started to visit an osteopath. I can remember my Mum massaging my arms and legs every night with oil.

The next significant memory is one of me lying in bed one summer evening and by this time I was probably about 14. I needed to spend a penny and had to rely on my mum lifting me out of bed onto a commode. I could see my parents at the top of our garden but they could not hear me call. I did not want to wet the bed so I attempted to get out of bed. I remember falling to the floor but I somehow crawled to the top of the stairs and was going to try and get down backwards. I fell to the bottom. Blackness.

My next memory is of getting stronger. I think we all thought a miracle had happened (enough prayers had been said) and indeed I do not know whether it was the fall, the osteopath or the oil but I got stronger and stronger. By the time I was 16 I was walking, albeit with a funny gait but I was nearly normal. Stairs were still difficult, as was getting up from low chairs but I found my own way of managing by making sure there was something to lean on.

I actually cannot really remember whether I was still under any doctors during this time – I probably was but just do not have any recollection.

I started work as a secretary in London, met a new boyfriend and by the age of nineteen, became engaged.

It was at this stage my parents suggested that I ought to get advice because of the diagnosis of MD and the fact that it could affect any decision regarding having children later on.

An appointment was made as an outpatient back at the Maida Vale Hospital and I remember having to be re-admitted into hospital for tests, taking with me blood samples from my parents and grandparents as well as blood samples from my future husband and his immediate family.

I recall a further muscle biopsy being taken and I think another lumbar puncture – definitely the needles again! This time when I left, the doctors told me that they did not think that I had MD but a form of polymyasitus - which I have not got a clue how to spell or indeed what on earth it was.

All I was interested in was the fact that I was told I could have children without the fear of the MD being passed on.

I married at the age of 21 and went on to have a beautiful son and daughter. The condition remained relatively stable and I was able to do most things. Obviously not like a 'normal' person – I had difficulty in lifting the babies when they were tiny but I found my own way to do things and I was blessed with excellent family to help with the really difficult tasks.

Life just ticked by but looking back I suppose the muscles were gradually getting weaker, but it did not stop me doing very much, just an inconvenience that I learnt to live with. As the children were getting older, I returned to part time work – making sure it was a ground floor office with no steps and then the opportunity arose in 1982 to start up a new company with two former work colleagues.

As a hobby, I ran a slimming club in the evenings so I could control my own weight as much as anything – something quite difficult when mobility is not so good and the condition remained fairly stable for the next few years.

However, by the time I was reaching my middle forties, life was getting a bit trickier – I was finding it increasingly difficult to get out of my car. I had to ensure I always parked where the ground was absolutely level – a slight incline meant the difference between getting out of the car or staying inside! I could never sit down in a normal chair because I could not get up again and therefore could only go out with my husband because he had to lift me up to standing. At work I spent all day sitting on a high kitchen stool. I had to be lifted off the toilet and bed and was beginning to feel a bit down.

I asked my GP where I could go for assistance and I was referred to Professor Hughes at Guys Hospital. It was such a relief to meet this gentleman – he understood exactly the difficulties I was encountering. He arranged for me to go into Guys for more tests which I was grateful to do this time! After the results were to hand, a diagnosis of Limb Girdle muscular dystrophy was given. However they were able to reassure me that my children would not be affected (indeed they are not, they are both married now and I have five healthy grandchildren).

In one way it was a relief to have a firm diagnosis because at least I knew what I was dealing with. Professor Hughes was such a help and encouraged me to find equipment to help me to continue to do things in a different way rather than get discouraged about not being able to carry out tasks the way 'normal' people do.

I was informed about a 'thigh lift' – to help me get out of my car, a profiling bed that raised high enough so I could 'step' off the bed when I wanted to and best of all, a toilet lifter to get my dignity back. I invested in an armchair that also raised high enough and life suddenly got a whole lot easier.

As I approached my fifties, I was finding walking very difficult and absolutely dreaded the thought of going into a wheelchair but in actual fact, the wheelchair gave me my life back.

For the first time I could go out with friends to a cinema, a theatre and a restaurant – all impossible before because I could not get out of the seats!

I have discovered you can apply for tickets to see Wimbledon, and you can travel on Eurostar and cruise ships so you can go abroad without flying. (I do know that it is possible for people with our condition to travel by aeroplane but I have not attempted this yet).

Finding suitable holidays is not easy – maybe it is because I do not use a hoist so therefore accommodation with suitable electrical profiling beds, toilets, etc is quite hard. However, there are now several holidays offering accommodation with electric beds. I have solved the problem of toileting with a mobile lifting toilet which doubles up as a shower chair. Bathroom "sit to stand" equipment

I have sourced a company that actually allow you to hire a profiling bed and will deliver it to your holiday destination and another company that can provide pillow lifters which assist in sitting you up in bed.

Because I am still working, I was lucky enough to be able to apply for a grant via the Access to Work scheme to receive assistance towards the purchase of a Balder wheelchair and Chrysler Voyager car. This enables me to drive the car from the wheelchair so I am completely independent.

I have recently celebrated my sixtieth birthday and am pleased to say that the company we started up 25 years ago is still going strong and I am still able to work full time hours.

With assistance from the direct payment scheme I am able to employ a Personal Assistant who helps me with showering, hair washing and dressing in the mornings so that I get to work on time! I am very fortunate to share a family home with my daughter, her husband and children so there is always someone around to help when I need it.

I have realised over the years that you have to be quite self motivated because, apart from the Muscular Dystrophy Campaign who provide such wonderful help, it is no good relying on local doctors or occupational therapists for advice.

The Limb Girdle conference days that have been held over the last six years have been absolutely brilliant, giving you a chance not only to actually meet all the experts who research the condition on our behalf but also to hear all about the latest products available on the market.

There are obviously some days when the struggles are more difficult than others and when I wish I could have a 'day off' from being disabled. I would love to be able to go shopping for fashionable clothes without worrying if the skirt is made of the right material to help me slide off the wheelchair or loose enough to get on easily. I would love to be able to wear a coat in the winter!

It has taken me quite a while to stop thinking about the things that are impossible for me to do and to concentrate on putting 100% effort into the things that I can. There has never been a better time to be disabled – more and more places are accessible for wheelchair users.

I would like to finish by remembering the words the teacher said to me all those years ago – "you can do it". And I can.

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