‘My body was rapidly unravelling’: living with motor neurone disease

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Helen Carmichael was diagnosed with MND last year but still had to maintain authority as a teacher

I was sitting on the commode getting washed on Wednesday morning when I heard the news about the death of Stephen Hawking. Although, like him, I have an impressive case of motor neurone disease (MND) and can no longer walk nor talk, I never really felt we had the same illness: his long life, not to mention his genius and academic career, seemed to put him in a different category to me. It was still a shock, though, so maybe I had identified with him more closely than I thought.

I was diagnosed with MND in May last year, 16 months after the fingers on my left hand started getting mysteriously stiff and a year from my first visit to the GP. This is entirely normal with MND, which is tricky to diagnose, but the months of inconclusive tests are horribly stressful. My body was rapidly unravelling, yet I still had to try to negotiate my life and maintain some semblance of authority as a secondary school classics teacher. To the anxious newcomer, MND presents an extremely unappetising vision of the future. Media coverage tends to be quite sensationalised, especially when dealing with people arguing for euthanasia. Journalists often focus voyeuristically on the horrors of the physical symptoms, which can make researching the illness quite a traumatic business.

Related: The eyes have it: how technology allows you to speak when all you can do is blink

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This post was syndicated from Health | The Guardian. Click here to read the full text on the original website.


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