Penny - MND

Age at interview: 59

Age at diagnosis: 56

Brief Outline:

Penny was diagnosed three years ago (2003) with ALS, after having arm weakness, pains and coughing fits for three years. The condition has progressed quite slowly so far.

Background:

Penny is a retired primary school headteacher, married with 2 adult children. Ethnic background/nationality: White British.

 For more clips from this interview click here.

Due to weight loss this woman with motor neurone disease was advised to have a PEG feeding tube...

 So I was referred to the local hospital to see the speech therapist and the occupational therapist. The speech therapist and the rehabilitation consultant were talking about me having a PEG because of my weight loss. I felt very strongly that I didn't want a PEG at this time, and fortunately my MND consultant agreed with me. I think I've been proven right, because three years later I've still not lost any more weight. So that was a good thing. And again the speech therapist, I can contact her when and if I need help.

 

Is there any way the doctors or any of the nurses communicated to you, have there been any good examples or any not so good examples?

 

I suppose good examples are people saying, you know, “We're here to help you in the way that you need”. I've appreciated that more than the example of, “Well, you're a very thin person. Therefore I think you need a PEG”. And that was really quite frightening. Because although yes I am a very thin person and that is one of the troubles with MND, I've only lost about a stone from my original weight, and I was a pretty thin person beforehand. So, yes, “Let's, let's work together about finding what solutions you need” as opposed to, “This is what I think you need”. That works better for me. Whether it would work as well for everybody, I don't know. But it certainly works better for me that way, yes.