Former Scotland rugby player, Doddie Weir, has been in the news again this month. He was interviewed on BBC Breakfast TV alongside Rugby League star, Rob Burrow, and pro footballer, Stephen Darby, both of whom have recently been diagnosed with MND. Tragically, both men are even younger than Doddie (49). Rob is just 37, while Stephen is a mere 31 years old. Life can be so unfair. The interview can be found at https://www.bbc.co.uk/programmes/p08304s6 .
We visited Nottingham’s Queens Medical Centre (QMC) this month for my routine quarterly MND clinic. The team, there, seemed quite happy with me, noting my relatively slow rate of physical deterioration. Although it is slow, I have been experiencing increasing difficulty getting up out of the wheelchair, especially when tired, sometimes needing a helping hand. My one remaining straight finger is also beginning to droop.
Parking at the QMC, as at most hospitals, can be difficult so we always travel by taxi. With my recent struggle to get up from the manual wheelchair, we decided, for the first time, to request a WAV (Wheelchair Accessible Vehicle) taxi, and take the electric wheelchair. It was so much easier, being loaded into the back of an adapted minibus with a rear lifting platform. At the QMC clinic, I was weighed together with a very heavy electric wheelchair. In all my previous visits, I’ve managed to stand up and step onto the scales. Unless someone made a note, my medical records are going to show I’ve put on a huge amount of weight in the last few months!!
While there, I asked the Consultant about MND research studies. The QMC doesn’t participate in Neurological research projects, sending people to Sheffield if they want to participate, so even if the new trial in Edinburgh is extended to other hospitals, my nearest centre would be Sheffield. I don’t think we could cope with further regular visits there.
I’m delighted to announce that my blog has gone international this month. Daniel, the proprietor of the language school I used when working in Buenos Aires, has been added to the mailing list. Daniel and I have been playing chess by email ever since Doreen and I moved back to the UK 23 years ago.
It was school half-term week recently so our daughter, Fiona, suggested we join her and her two boys for a pub lunch. Fiona came to our house from where we could all walk/wheelchair to the pub. Our first problem came when I couldn’t get up from the manual wheelchair to transfer to the electric one. After three failed attempts, Fiona grabbed me under one armpit, and Doreen the other, to give me that extra bit of lift.
Once in the electric wheelchair, all should have been ‘plain sailing’, but no! Our house has no fitted carpets, which is better for wheelchair movement, but Doreen couldn’t resist laying down her favourite Indian carpet in our spacious hall, which is where I park the electric wheelchair. Unfortunately the wheelchair has a tendency to gather up the carpet and drag it along behind. On this occasion, I set off slowly, onto the carpet, and thought I’d negotiated the move successfully, so continued across the hall and into the corridor leading to the back door and the wheelchair ramp. By the time I realised the carpet was following me, I’d already entered the corridor and become stuck! Doreen was behind me and was struggling to untangle the ‘Gordian Knot’ of carpet. Fiona was up ahead but couldn’t get past me in the narrow corridor to help! Fortunately, after quite a bit of manoeuvring, Doreen was able to free me. The carpet is now rolled up and stowed in a cupboard!