Mike - Motor Neurone Disease (MND)
Age at interview: 54
Age at diagnosis: 52
Brief outline: Mike was diagnosed with bulbar onset MND 2 years ago in 2005. He is now unable to speak, so was interviewed through his wife Gill. He uses a whiteboard and Lightwriter to communicate. He has a PEG (Percutaneous Endoscopic Gastrostomy).
Background: Mike (aged 54) and Gill (aged 49) are a married couple with 3 adult children. Mike retired as a Fire Master. Gill is a management consultant. Ethnic background/nationality' White British.
Audio & video
- Age at interview:
- Age at diagnosis:
- Mike (aged 54) and Gill (aged 49) are a married couple with 3 adult children. Mike retired as a Fire Master. Gill is a management consultant. Ethnic background/nationality' White British.
Certainly there's a definite lack of awareness of MND with, with health professionals. [Mike writing on whiteboard]. Our GP openly admits, you know, Mike's the first MND patient that she's ever had, and might be the only MND patient that she ever has. So of course they're very much, they learn from what we learn, you know. And we've become almost the experts in MND in our situation. The frustrating thing is that when you do go out of the team - the team that work with us are, are superb, absolutely superb - but when you're taken into an alien environment, if something happens and you've got to go to a different hospital or whatever, it's so frustrating because there's so little knowledge about MND. And as I say to people, the people try to treat him as a normal patient, and he isn't. There's other factors that need to be taken into consideration. So for us there, there needs to be more awareness at the medical level of what actually is going on, you know. And there's some horrendous stories on the websites about how people are treated, how MND patients are treated when they go in. And God forbid, if Mike was ever on his own, I don't know how he'd cope with it. People that are on their own. So there needs to be more, more awareness about MND. It seems to get forgotten. Because it's such a rare disease, it gets forgotten, you know. One observation that I made just recently and I passed comment about it, when we go to the local hospital, the hospital waiting room is full of information about MS. There's not a single piece of literature about MND. Now it could be that Mike's the only patient that goes there with MND, but it doesn't matter. There should be information in that clinic about MND. So you just feel as though nobody's listening really, you know.
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