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Points for Reflection

1. Bob describes the input of social services in his life. Consider the input that they could have in the life of your patients and how you could support that

2.Bob talks about the discrimination experienced as a wheelchair user. Identify these issues and discuss

Activities

1. The story here describes the risk for the storyteller’s daughter who wanted to pass a medical examination for her career. If the storyteller was one of your patients and his daughter had approached you for information about her own risk of ataxia - how would you deal with this? What would you do and what would you say to her?

2. Identify the different benefits that could be received by Bob to support him

3. How useful might the Disability Discrimination Act be in Bob’s story? How much knowledge do you have?

Quotes

"I am just thankful I suffer no pain as so many friends do."

"I am afraid the general impression of the general public is the blanket one - that unfortunately, a wheelchair user must have a deficiency in all areas - not true."

"What does surprise me is that the consultants concerned with the diagnosis have not been interested, except when I persisted and even then I was left not much wiser."

Further information

Ataxia UK: http://www.ataxia.org.uk/

US National Library of Medicine, Genetics Home Reference: Ataxia

Multiple Sclerosis Society: http://www.mssociety.org.uk/

Carers UK: http://www.carersuk.org/Home

Information on public services. See sections on ‘Caring for someone’ and ‘Disability Living Allowance’.

British Association / College of Occupational Therapists


Location: The Stories
Transcript

You can download the full transcript here

Confessions of a wheelchair ataxian
Bob’s story of life with this autosomal recessive condition

It’s very likely that I had a mild form of ataxia as a schoolboy as I was always conscious that I could not kick a football, even playing marbles was difficult.

Although this is now over sixty years ago, little was known about ataxia then. I thought my clumsiness was because of my size – I am six foot four. I was particularly aware of being clumsy when out for a drink with my brothers in my late teens, I would always spill the beer (sinful even at 1/3p per pint).

I had mostly worked in solitary occupations until in my forty sixth year, when I started shift work with British Rail which necessitated twelve hour shifts. During the night, well into my work, I found myself kicking the steps leading to the Entrance and exit windows (my duties involved booking lorries, carrying containers for onward journey by rail). None of my colleagues had this problem. Eventually I had to leave this position as there was no other suitable employment available.

I was unemployed for a year when fortunately my GP, who was aware of my limitations, introduced me to a local employer where I worked for eleven years – I was walking with the aid of a stick at this stage. The firm was taken over in 1990 and my job disappeared. With no other work suitable, I had to retire at fifty-six. I was finally granted Disability Living Allowance in 1992 and obviously have not worked since.

My ability to walk has gradually deteriorated and I would even fall when using a walking frame. I felt I would be safer using a wheelchair which I have used for five years. Fortunately, I can get out most days mostly by taxi. I live in an adapted council bungalow but all doors are badly marked because I have a large chair and space is very restricted. Unfortunately, my wife, who was also my carer, died earlier this year, so apart from the personal loss, I now live on my own. The council are very supportive of my independence though and plan further adaptations to assist in the near future.

I think the whole question of how wheelchair users are treated by the general public is dependant on the wheelchair users’ attitude. It is important to understand that most people will help if asked. Unless you are familiar with a wheelchair user’s requirements, a certain fear of doing the wrong things, is always present. Some wheelchair users are much more affected than others and obviously need more attention, perhaps some sort of subtle visual sign might help. I am afraid the general impression of the general public is the blanket one – that unfortunately, a wheelchair user must have a deficiency in all areas – not true.

I think people should give more thought and consideration to carers; they are mainly unappreciated and often unpaid – adding more anxiety to their task. Once again, they make life worth living for the disabled. I have several friends who have three carers call during the day. It is important to have a positive attitude to life – even at my age. I have attended a remedial weight – training class twice weekly over almost ten years. My instructor is my age – a former Olympic rower. And a member of our class has recently represented Britain in America and won – he is 93.

It’s not what you have to complain about that matters. But what you can do despite handicaps. My first reaction to my diagnosis was one of relief – remember this was twenty years ago – little was known about ataxia. I had suspected something was wrong for some time, to find it was not cancer or MS was quite a big relief.

Having said that, several forms of the hundred or so types of ataxia are very progressive. Fortunately for me, apart from finding the usual slowing down to be expected as one gets older, I don’t feel any different to how I felt when I first spent time in a wheelchair five years ago. I have friends who are much worse affected than me, even though they are not in a wheelchair.

At that time, my daughter was about to join the police cadets. As you’ll know, she had to pass a very strict medical. I was very concerned about the genetics hereditary factor and took genetic counselling. I was assured that there was no problem and as far as I am aware, no sign since in the whole family.

The medical profession at the local surgery are very helpful. My doctor has treated me nearly twenty years. Fortunately, I only consult her three or four times a year. It was my wife whilst she was able (she was my carer before being struck down and eventually succumbing to cancer), who had to regularly see the doctor. My wife was always given prompt attention because of my dependence on her.

We are told that the average GP will only see three ataxia cases in their career so we can hardly expect them to be an authority on our complaint. What does surprise me is that the consultants concerned with the diagnosis have not been interested, except when I persisted and even then I was left not much wiser. I still don’t know if I can find out my SCA No, the only progress report was ten years ago.

If I thought there was any prospect of treatment being available, I would be making enquiries tomorrow but nothing I hear of seems appropriate. I am just thankful I suffer no pain as so many friends do. As you might imagine, I live a completely different lifestyle - being retired I have time to belong to various groups and consequently, have many friends. I think this is essential, especially when living alone. Obviously living in a wheelchair is restricting but I manage to get out most days – usually by taxi – I have a regular driver who is very helpful. It’s a bit expensive – but what are benefits paid for?

I don’t require the services of doctors or nurses for ataxia but I do have regular visits from other health professionals. My occupational therapist keeps me supplied with the latest aids available. For instance, she obtained me a hospital bed complete with an aid (separate) which fits under the mattress providing a handle at each side to enable me to turn over. My social worker has arranged for me to have respite care at a local rest home every two months next year.

I can’t imagine any better care from the authorities (although of course a cure would be most welcome).