Motor Neurone Disease (MND)

'Speedy' - Interview 19

Female
Age at interview: 53
Age at diagnosis: 51

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.

Background: 'Speedy' is a full-time mother, single with 1 son aged 13. Ethnic background/nationality' White British.

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'Speedy' was a keen competitive runner, and first noticed symptoms during a race just over three years ago, when her foot started dropping. Her GP referred her to a neurologist, but at first tests were inconclusive. Within a year, she had to give up racing, and when she took up walking with the Ramblers she found even walking was becoming difficult. At her next appointment the neurologist was still not able to give a definite diagnosis, but ruled out multiple sclerosis. With hindsight she believes he suspected it was MND but did not tell her. She would have liked someone to tell her earlier it was a possibility, and wishes someone had advised her to make the most of her time while she was still mobile. 

She asked for a second opinion, but then got a message saying the new consultant would not see her after all. She found a private neurologist through the Yellow Pages, who diagnosed MND. She was upset by the way she was told; the neurologist asked her to guess what condition it was and then he would tell her whether she had guessed correctly. She guessed Parkinson's first, then MND, and he said that was probably right, although he wanted to do one more test. She had a terrible time over Christmas wondering how to tell her 13-year-old son. 

When she went for the final test the technician said he did not believe it was MND after all, and for a while she believed him. However, when she went back to her original NHS consultant he agreed with the private consultant, and thought it was probably the primary lateral sclerosis form (PLS). This has since been confirmed by a specialist MND consultant. 

For 'Speedy', the loss of sport has been a huge blow, as it was her main interest and the core of her social life. She was upset by one friend she used to meet regularly at the gym, and another friend who accompanied her on visits to the consultant, but who both now will not speak to her. She often feels lonely and isolated, and frustrated by the increasing loss of mobility. She now uses a wheelchair a lot of the time, although she prefers to sit in a normal chair if possible. For her the wheelchair means she is 'no longer in the land of the vertical, which is a big difference to the land of the sitting.' She has a hand-operated car so she can still drive independently. She has made herself take up other interests, including learning the piano, knitting and embroidery, even though they would not normally be her choice. She gets very tired, and sometimes very tearful and afraid to think of the future, even though she feels lucky that PLS is not terminal. 

It has also been a great sadness no longer being able to do things with her son, such as walking round town together, taking him to see friends, or going on holiday. He finds it hard to talk about his mother's condition, but helps around the house with certain tasks. So far 'Speedy' has not relied on anyone else for her personal care, and does not want to think about having a carer. She has recently decided to get more involved in activities organised by the local MND Association.

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