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Motor Neurone DiseaseArrow
ALS- amyotrophic lateral sclerosis/MND aged 20-49
Kim - Interview 10  

Kim - Interview 10

Age at Interview: 39
Sex: Female
Age at Diagnosis: 38
Background: Kim is an occupational therapist, married with 2 children, aged 12 and 10. Ethnic background/nationality: White British.
Brief outline:Kim was diagnosed with MND (ALS) about a year ago (2005). Now unable to walk she needs help with most daily tasks, but is still working as an occupational therapist and able to drive. Her speech is not affected.

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It seems pointless being assessed by the neurologist every six months. She may find clinic visits more useful when she needs more help from a range of professional staff.

 



Every six months I'm assessed by my neurologist but to be honest with you I find it a pointless task really because if I was struggling with anything I would go and see them. So I just feel like I'm going in and it's sort of - I wish I had the vocabulary to explain myself a bit better. I feel that you're just going and they're paying lip service to you really because there is nothing they can do for you. There's nothing new on the markets that they can give you. 

You go in there. They ask you how you're feeling. You tell them. They, they test, test your reflexes once again which you know are appalling and very brisk. And off you go again for another six months. 

I think I would prefer it if I could just make an appointment to see them when I needed referral to a speech and language therapist or if I was finding difficulty with my breathing or I noticed something that I though I needed help with. Rather than me just turning up after six months and then them saying, “Ok”. Test your reflexes and send you off home again [laugh].

Right. You feel it seems quite pointless?

At the moment. When I get worse I'm sure I'll find them invaluable. But only when I need all the other referrals and all the other things but at the moment I don't need it.
Jonathan Miller - Motor Neurone
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