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Points for Reflection

1. Iantalks about how he has come to terms with his disability. What impact might the diagnosis and prognosis have on a child or young person?

2. Imagine Ian’s parents ask you about the best way to talk to their son about this diagnosis. Would you be able to offer any guidance? What sources of support might be available to help them in this task?

3. Ian’s mother’s concerns were not taken seriously because she was seen as an over-concerned mother following the death of her daughter. What lessons have you learnt from this story?

Activities

1. What clinical interventions are used to manage A-T?

2. Having read his story, identify specific support that might be of benefit to Ian or similar patients.

Quotes

"... if other people do everything for you, you end up relying too much on them and not doing anything for yourself."

"...he explained it to my parents and me and I had to accept it. It is something I have learned to live with, there is nothing anybody can do about it, and I just have to get on and live my life as best as I can."

"Disability is something we are born with; it isn’t anyone’s fault, it is just one of life’s little challenges and we have to make the most of our lives with what we’ve been given. I have never really let my disability rule my life…"

"I had a sister who died of a cot death at twelve weeks in 1958 and this led to people not listening to my mother when she was telling them about her concerns about me."

Further information

Ataxia-Telangiectasia Society: http://www.atsociety.org.uk/

SCOPE - the disability organisation whose focus are people with cerebral palsy: http://www.scope.org.uk/


Location: The Stories
Transcript

You can download the full transcript here

Ian’s story: A brief history of my life so far with ataxia telangiectasia
Living with ataxia telangiectasia, an autosomal recessive condition

I am 50 years of age, having been being born in 1956.

In 1963 my family moved to a house in a new housing estate and I started four years at the local junior school, and it was when I started going to school that the teachers started to notice that I fell over more than the other children.

I had been diagnosed as having cerebral palsy, at a London hospital when I was seven years old; (this stayed with me throughout the rest of my time at school and beyond), but my mother had her doubts as and did my local doctor, who questioned the original diagnosis of cerebral palsy. I can remember going up to the local hospital for physiotherapy once a week after we had moved down.

During my time at the school, I did most of the things that boys do at that age. I particularly remember my piano lessons after school with great happiness sadly I had to give these up because of my spasms.

When time came for me to go to secondary school, I was finding it difficult to keep up with the other students and a decision had to be made between my going to the local secondary modern school and going to boarding school.

It was decided that I go to boarding school, owned by the Spastics Society, in 1967. I had a wonderful time there. The school was the first 'special' school I went to. We had some weekends when we went home to see our families.

In 2002 Disability Now published an article about the 50th anniversary of the school, which had been knocked down in 1990; I thought was very hypocritical of them as it was the Spastics Society (now Scope) who sold it in the first place, although the entire site had been designated only for the use of disabled people.

I began going on group holidays with other disabled people in 1977, my first three holidays were organised by the Spastics Society who then stopped doing them. They handed over the holidays to another holiday company, with whom I have had many nice holidays. I then went on several holidays with another organisation up until 2003, and that was the last time I went on holiday. Having had several trips on the Lord Nelson back in the 1980`s, something I enjoy.

I was diagnosed with ataxia telangiectasia after having extensive tests to find out what really was wrong with me in 1980 after spending 2 weeks in another hospital in London.

I have been diagnosed and wrongly diagnosed on three occasions. I had a sister who died of ‘cot death’ at twelve weeks in 1958 and this led to people not listening to my mother when she was telling them about her concerns about me, even when I was at the school. After finally being diagnosed with ataxia-telangiectasia by my neurologist, he explained it to my parents and me and I (we) had to accept it. It is something I have learned to live with, as there is nothing anybody can do about it. I just have had to get on and live my life as best as I can.

I have never really considered counselling, what's the point? Nobody else can live my life for me; and if other people do everything for you, you end up relying on them too much and not doing anything for yourself.

My family has always been there for me when I needed them, as they still are.

As for my experiences of the NHS, I have been fortunate to have good GP'S and other medical facilities in the past. My experiences of the staff and facilities in hospitals, which are the places you’d expect to be the most likely to deal with disabled people, I have found that this is not the case. The last time I was in hospital with cellulitus, the staff kept bringing me a commode chair, even though there was a disabled toilet just down the corridor.

Without the backing of my parents, I wouldn’t have been able to have done any of the things I have mentioned above. I consider myself to be extremely fortunate to have done everything that I have done and I know I wouldn’t have been able to do any of it if I hadn’t been disabled.

Disability is something we are born with; it isn’t anyone’s fault, it is just one of life’s little challenges and we have to make the most of our lives with what we’ve been given. I have never really let my disability rule my life, and have a good family who have always been there when I needed then and they have never prevented me from doing the things that I have done.

My Mum, Dad and sister and I moved down here in 1976 two years after I left the school in 1974 when my parents bought a house on a new housing estate which was under construction. I moved ‘temporarily’ into a flat on my own in May 1995.

I had quite an active social life when I lived in my flat. Swimming, bowling, and going to my carriage driving club. Due to transport difficulties the swimming and carriage driving had to stop, although I continued to go bowling.

The latest chapter in my life is now just beginning.

I have had to move because the flat was too small, and don’t regret moving, I now have a lovely purpose built bungalow, a nice garden, but lack a disabled bathroom, but I’m sure the rest will follow in due course. Although everything has stopped because of my move, I have to leave that all behind and start all over again here.

Later, Ian adds this to his story:

I have now lived in the bungalow for over sixteen months and there have been many changes – a Closamat toilet and ceiling hoists being put in. When I moved from my flat to the bungalow, I had to have my phone system transferred. This has been a problem as I could not use the normal BT phone due to my deteriorating hand control, so when my carers went out, I could not answer the phone. Now I have a phone that doesn’t work in my bedroom – which is where I spend most of my time – at my computer and where I need it the most!

My brother and his wife have helped me sort out my care payments and I have been told about two clubs I can join – sadly neither was what I was looking for.

The local transport is wheelchair accessible and I can now go shopping in town, to the cinema, and have joined the local disabled swimming club.