I have donated my brain to a brain bank in [county]. That’s... was surprisingly quite difficult to manage. Apparently it is useful, or will be useful, for my brain to be donated, but the - just to be a bit negative - the paperwork involved was awful. And it was written in, well, by - let’s be rude – by, if you like, a PhD student who put everything in medical terms, and I didn’t have a clue as to what many of the questions meant. And I took it along to my consultant neurologist, and he took one look and he couldn’t understand it either. Anyway we got a simplified form out of that and...
Was that the information leaflet or the consent form or?
It was a sort of questionnaire that went along with the... my request to donate my brain. But as I said, both I and the consultant were fairly appalled at the uselessness of the questionnaire.
So that was................
But it was about - I can’t give you examples - but it was, ‘would I mind giving’, if my brain was given to some – no, I can’t even think of the examples, but it was just put in language which was beyond me.
And that contrasts with your experience of the (Motor Neurone Disease study name) study?
Oh indeed, yes, and any other study I’ve taken part in. They’ve always been straightforward and easy to understand, and I mean this isn’t a research project and it’s just a matter of me donating my brain, but it’s speaking the obvious to say that if you can’t fill the form in, then what use is donating your brain? Well, you’ve got to make the, make life easy for people.
And is that an MND-specific brain bank, or other neurological conditions or?
I think it was other neurological conditions as well.
And so I think any brain tissues that can be donated, particularly from people with MND, would be well received.
Was that a difficult decision to make or - I mean, did you talk about it in the family or?
Yes. I haven’t gone to any great lengths to do so. I mean I talked it over with [name] – sorry, my wife. But again it’s a bit of a no-brainer, to use an odd colloquial term. If it’s going to help - well, obviously it won’t help me - but if it’s going to help other people then why not? And I’ve certainly no wish to be buried in a grave, I’m not religious, so if I’m going to be cremated they might as well have my brain beforehand.