Guest Blog | 1 Comment |
Living independently with muscular dystrophy
This guest blog is written by Rose Lawy, and tells a bit about how her disability first appeared, how it has developed – and how she goes about maintaining her independence
Life with muscular dystrophy
For me, as someone with muscular dystrophy, a degenerative muscle-wasting disease, living independently has, paradoxically, meant that I have needed to recognise when I am dependent in order to be able to live an independent life.
The type of muscular dystrophy I have is facioscapulohumeral. It affects all voluntary, skeletal muscles, but to varying degrees in different people. In my case my face is mildly affected but it is severe in my arms and legs as well as my back and abdomen, and over the years I have made many adjustments in the way I live.
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No diagnosis, though the signs were there
Muscular dystrophy remained undiagnosed until I was in my early 20s, although I now realise that signs of the disease were there to be seen when I was as young as five, if not younger.
Looking back on that time, I realise that I developed strategies to deal with my clumsiness and ungainly gait. My friends used to think it was just me being me – which of course it was – and I turned all my many mishaps into a source of laughter.
I used to bike to school. Although the route was perfectly flat, I trailed all my classmates, pedalled in a peculiar fashion and turned every excursion into a source of amusement.
Clowning around was a way of dealing, emotionally, with physical shortcomings from an as-yet undiagnosed illness.
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A first, unorthodox walking aid
A train journey to Barcelona prompted the use of an unorthodox walking aid, one of the first impromptu aids that I recall using before I was 20.
I had gone on holiday with friends, and as usual, they thought I was clowning about when I could not keep up with them and their rucksacks. Before we embarked on our adventure, I tried to try on my friend’s rucksack, but could not get the straps on my shoulders. None of us thought this particularly odd.
So, in the days before suitcases and bags had wheels, I acquired a shopper, the type of square trolley, not so common nowadays, that you see the elderly and the not-so-elderly using for small purchases on the high street. It was just what I needed to have any hope of getting to the train on time.
There I was, slowly clattering after my nimble backpacked friends, pushing an inelegant and unwieldy trolley through busy stations, leaving them to haul it up and down stairs, on and off trains, for me.
It was only later that I realised that gravitating towards the trolley for support was an indication of my weakening physical strength and not just me being me.
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A Blue Badge and a yellow Mini!
My first major official modification I made in the way I lived in order to maintain my independence was when I stopped using a manual car, bought an automatic one through Motability and acquired a Blue Badge to allow me to use disabled parking spaces.
My distinctive yellow mini was a way of flouting my physical shortcomings. For me, it was uplifting to drive a brightly coloured car, one that was easily identifiable as mine in my neighbourhood. Emotional uplift defied physical restrictions: not some anonymous silver or grey car for me!
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Using a stick was a big step
At the age of 32 I began to use one stick. I had resisted this move as I thought I could better disguise my problems with walking by not using a stick. But I was beginning to be very unsteady, tripping frequently. I had become dependent on walking with someone so as to have an arm to hold on to as I was scared of falling.
Once I gave in to the support offered by a stick, I realised that I should have relied on it sooner – but my vanity as well as my worry over how it would be received by the children I taught at primary school had got in the way.
Once it dawned on me that I was placing limits around what I could do by not facing my inadequacies I decided that I wanted to be as independent as possible and never mind appearances.
It may seem like a small step to start walking with sticks, but for me it was very big, and perhaps the one that has stood me in good stead. For the decision was not really about whether or not I needed a walking aid but more about being honest with myself and facing my weakening abilities in a constructive way.
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A first experience of disability for my pupils
My use of a stick started at a time when disabled children were not included in schools, so most of my pupils had no experience of encountering disability.
I had always been very open about my disability and would talk about it to the children so they understood my difficulties and did not, for example, run into me, causing me to fall.
We even made big books about muscular dystrophy, with lines like “My teacher is disabled” and so on.
I worried over how to deal with the stick at school and to avoid being stigmatised because of it. My solution was to make it a feature that would appeal to the children. The stick became known as Wacky and became a great teaching aid in my classroom.
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Sticks were gradually superseded by a mobility scooter
The next major change in terms of mobility aids was when I started using a mobility scooter at the age of 44 for the occasional errand.
I disliked using a manual wheelchair because I am heavy and it was hard for my friends to push me. Also, I hated the lack of independence it forced on me.
But I should have started using a mobility scooter before I did because of the independence it gave me. I had been unable to look at the flowers left at Princess Diana’s funeral for instance as there was too much walking for me whereas if I had used a scooter I could have gone to the palace, if not with Alice at least with my friends.
Scooby Doo, as my scooter became known at school, became a great way to motivate the children’s imaginations.
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Home adaptations have followed – all in the name of independence
I found that I also needed to start making adaptations to my home, beginning with a simple raised toilet seat. Then I moved on to using two sticks for walking. I have now graduated to a power chair with a seat riser.
Then came a homecare bed, and a hydrotherapy pool with pool hoist to enable me to exercise in order to maintain muscle strength.
My latest addition has been a toilet lift so that I can be safely independent in my bathroom.
I use remote controls to put on side lights, reachers and sticks to pick up and reach objects as my arms have got weaker.
As I am getting weaker and less able I am always looking for implements which maintain my independence. Bring on the driverless cars. I am hoping there will be robots to help me soon. Suggestions for names gratefully received…
Further reading and resources
You can keep up with Rose Lawy on her more-or-less fortnightly blog: rosiewithoutaramp.wordpress.com (link will open in a new browser window)
Looking for aids to maintain independence? We have plenty of information here! Just click the links below to find out more…
One Reply to “Living independently with muscular dystrophy”
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Love the naturalness and clarity in this description of disability. Most poignant when recognising that pride can hold some e back from living independently or more comfortably – goes for everyone, including ablebodied people. Well done.