'Speedy' - Interview 19  

'Speedy' - Interview 19

Age at Interview: 53
Sex: Female
Age at Diagnosis: 51
Background: 'Speedy' is a full-time mother, single with 1 son aged 13. Ethnic background/nationality: White British.

Brief outline:'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.

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Female
For a long time she managed to be 'happily in denial' but then reality set in and her whole life seemed to revolve around disability.

 



Well the impact on me is… huge. For a long time, even when I was on a three-wheel frame, I was in denial and I was happily in denial. Because as far as I was concerned it wasn't really happening. I might be on a frame, but it was only a frame. I could still do, go into town with my frame and do short bits and whatever. So I was like happily in denial. And denial's got an up-side, you know? “It isn't happening. So therefore I can still, you know, go into town, have a drink.” It had an up-side, the denial, and that went on for a long time, before it came crashing down, and the reality came in. And the impact on me was like, “Well, I should be able to put the 'dis' [disability] to one side and I should still be me,” you know. “'Dis' is only going to be one part - you've still got your personality, you know.” But I was struggling with that one. I knew that that might be a way of thinking but could I think it? No. 'Dis' was everything. It took over. It was 24/7. I couldn't put it away. When I got up in the morning and I went on that trolley, I couldn't put the trolley away. And I couldn't leave it, you know, I just couldn't, I had to live with it 24/7. My whole life was occupied with 'Dis' - it was like a full time job managing 'dis'. Managed the appointments, managed the car, you know, and all the hassle with the car. That was the block I could have really done without.

Jonathan Miller - Motor Neurone
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