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AnSWeR  > ConditionsSpina Bifida > Cases > Koysor > Interview Highlights 01



Interview with Koysor 01
 
What are your physical problems?
 

All images of Koysor courtesy of the Wellcome Trust Medical Photographic LibrarySpina bifida. It's a curvature of the spine. I'm paralysed from the waist down and I've have also got hydrocephalus as well which is part of my condition. Hydrocephalus means that there's pressure on the brain. I've have got two shunts in my head which prevent me from getting headaches, severe headaches and if both blocked up there's a danger of me not recovering from them. I've had that many operations over the last twenty years. I've have had two put in, whereas before I only had one. The first one was put in when I was born and the second one was put in twenty odd years ago.

Interviewer: Do you have problems with incontinence as well?

Yes I do suffer from catheterisation. I wear pads twice a day. I've been doing self catheterisation for the last nineteen years. I've got used to that.

 
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What is it like having to use a wheelchair all the time?
 

All images of Koysor courtesy of the Wellcome Trust Medical Photographic LibraryOther than going up and down kerbs I'm fine. Because I mean it's just the kerbs that I can't get down and other than that I'm fine.

Interviewer: So have you always have to have somebody with you then?

To get down a kerb, yes, because I'm frightened in case I fall out of my chair. It's hard. Very hard. I keep, I mean I've just been involved in a wedding, but I couldn't exactly do the things that my brothers were doing. The bride and groom, my niece and nephew, I couldn't exactly, take them out the car, put them in the car, whereas two of my brothers walked them to the car whereas I couldn't do that and I felt as though I did really bad. I have actually seen the video and I keep thinking 'I should have been doing that'.

 
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Are people supportive of you?
 

All images of Koysor courtesy of the Wellcome Trust Medical Photographic LibraryYes, my brothers and sisters are very supportive, yes. I have got a social worker who is supportive. I have got a key worker who is supportive as well. My mum is as well now, very supportive. So all the members of my family are very supportive in everything that I do. I have just recently got in touch with Care UK which is an organisation, which is a befriender situation and they take you out where you want to go, I mean, do whatever you want to do. And now I have that twice a week.

 
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How independant are you?
 

All images of Koysor courtesy of the Wellcome Trust Medical Photographic LibraryA lot more now than I used to be, a lot more. Because I can get myself around a lot more, via taxis, so I can get myself around places now.

Interviewer: Why couldn't you before?

Because I never thought about doing it. It's just since I've been to college it's taught me the way of getting myself out and everything. It was mainly the independence I went for when I was at college in the first place so that got my motivation, got me going again.

 
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questions Q1, Q2, Q3 Q4 | Q5, Q6, Q7, Q8, Q9
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Last update: 6 October, 2005 11:02 AM


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