I started falling over

When I was 14 I broke my knee and could not put my heel down to the
floor for two years. I recovered and followed my vocation by
pursuing a career in nursing. After successfully completing my
training I got a job and bought a house.

For two years I worked but then I started to fall over for no
apparent reason. I had some operations on my hips but these were
not successful and over time my physical problems seemed to move on
to a different part of my body after every operation.

Eventually I was referred to the National Neurological Hospital in
London but after various tests I was told my problems were “all in
my mind” and were not physical at all. But my condition continued
to deteriorate.

After five years of pain and discomfort – and many visits to
different hospital consultants – I was finally diagnosed with
generalised dystonia.

At the time my shoulder kept dislocating and I’d gone into hospital
to have an operation to fix it in place. When I left the hospital I
was unable to return to my home as I needed support, and it was
decided I should go into a nursing home for four weeks’ respite.

During this period I received no help from social services in
returning to my own home. They didn’t even help me sort out my
financial situation and eventually my house had to be sold, leaving
me with a huge debt. As I had no means to pay this off, I still
have financial difficulties today and have to make small payments
each month.

My quality of life in the nursing home was not good, so, with the
help and support of my family and friends, I found a residential
home with a self-contained flat. This gave me some of the care I
needed but also allowed me some independence.

I have been here for a few years but my condition has deteriorated
further. Now my dystonia affects my hand, so I can’t write and
sometimes have trouble feeding myself. My swallowing and speech can
be affected and sometimes my eyes involuntarily close, which means
I reading is hard. Staff at the home are not able to give me the
help I would like, and I’m starting to feel more and more isolated.

I have no peers to talk to and I have to depend on my family or a
volunteer driver when I want to go out.

Recently I got a new social worker and she is working hard to
assist me in improving my quality of life. We are working together
to try and get a council house near my family, together with a
24-hour package of care. This will allow me to be closer to my
family and friends and enable me to live normally again.

I recently agreed to act as the area contact of the Dystonia
Society for younger people in the Yorkshire region. We are planning
to organise social events for younger people affected by this
painful condition.

Alison Booley has dystonia, a neurological condition
affecting movement

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