Motor Neurone Disease (MND)

Kim - Interview 10

Age at interview: 39
Age at diagnosis: 38

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.

Background: Kim is an occupational therapist, married with 2 children, aged 12 and 10. Ethnic background/nationality' White British.

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Kim first noticed symptoms about a year before she was interviewed, particularly weakness in her right foot. She works as an occupational therapist and some of her clients had Motor Neurone Disease, so she knew quite a lot about the condition already. Although she did not fit the typical age group for the onset of MND, she began to suspect her own symptoms were similar to theirs. She went to her doctor, who referred her immediately to a neurologist. After two weeks in hospital, she was diagnosed with probable MND (ALS).  This was within 3 months after first noticing her symptoms, in 2005. 

Since then, her speech has remained unaffected, but her muscle weakness has slowly worsened, and she can now barely walk. She needs help with most daily tasks such as dressing, washing, using the toilet and eating. The MND Association has provided support and equipment, and she has a home carer coming in. Kim feels having outside help is important so that family members do not end up having to do all the care themselves. She takes riluzole, and has recently started taking antidepressants, which have helped reduce her mood swings and tearfulness.

As soon as she was diagnosed, she spoke to her employers and wanted everyone at work to know the situation. She continues to work part-time, and has special adaptations to her car so she can still drive. Her work colleagues have been hugely supportive, using humour as well as practical and emotional support.

At first Kim did not want to tell her children, in case they looked on the internet and were frightened by information about the condition. But then to raise money she offered her story for sale on e-bay, and at that point had to explain to her children that she had MND and was going to get steadily worse. Her 12-year-old son still gets quite upset, and she feels it is hard on both her children that they now do things for her instead of her doing things for them, but she tries as far as possible to act normally with them and be honest if they ask questions.

She has found it very helpful to use the BUILD e-mail forum for people with MND, although at the moment she is not using it, as she was starting to feel her identity was becoming too centred around MND. She believes it is important not to worry too much about the future, and to just accept each new challenge as it arises and deal with it.


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