MND research has featured prominently this month. At the end of September, an open letter signed by hundreds of people with MND was handed in to Downing Street. The letter urges the PM to inject £50m into targeted research over five years. The signatories, the youngest being only 21, each wrote a brief message to the PM, some commenting on the impact of MND, others simply urging action. Collectively, they tell a sad story of the devastating effect MND has had on so many lives. See: https://patientsunited2endmnd.files.wordpress.com/2021/09/mnd-patient-letter-20-sept-web.pdf
Also this month, I was recruited to participate in a Nottingham University research project. The project is examining the use of home ventilation by MND patients with the aim of helping to improve the care and support provided by health and social care professionals. Doreen was roped in as well to give the perspective of a family member/carer. The online interviews took about an hour each. We look forward to seeing the results.
In 2020, rugby league legend Kevin Sinfield ran 7 marathons in 7 days raising £2.7m for MND research. He moved recently from Leeds Rhinos to coach at Leicester Tigers and plans, next month, to run the 101 miles between the two stadiums. The route will be split into 7km sections, each one to be completed within 60 minutes. See https://www.bbc.co.uk/sport/rugby-league/58978435.
Earlier this month, Reyner, our youngest grandson, celebrated his 4th birthday. A party was organised for the following Saturday but on his actual birthday, Fiona and Tudor brought both boys to see us after school so we could give Reyner his birthday present. We then had a birthday tea followed by a cake with candles. It was a joyful occasion but with one poignant moment. At one point I was alone with 7 year-old Magnus. He was playing quietly with some trains on the floor while I sat and watched. He looked up at me and said, ‘I wish you weren’t in that wheelchair, Napa. It was much better before‘. I presume he was remembering the time when I could play physically with him, but that was 2-3 years ago so I’m surprised he could recall it. I was very touched.
Physically, I have noticed further deterioration in my arms and shoulders this month. I can barely lift my arms off the armrests of the wheelchair so I am now using my Neater Eater almost every day. It also means I can manage even fewer of the Tai Chi exercises on my Wednesday mornings at the hospice. Mel, the resident physiotherapist, assures me that imagining the movements is almost as beneficial as actually doing them. I hope she is right as I might soon be imagining all of them!
The sporting highlight of this month was the cricket T20 World Cup, being played in the UAE. But as a Scot, it did present me with something of a dilemma. The Scotland team, for the first time ever, qualified to play in the main competition alongside cricketing giants such as India, Australia and, of course, England. Normally, in any sporting contest between Scotland and England, my support of Scotland is absolute. But in my youth, growing up in England, first class cricket didn’t extend north of Yorkshire. There was no Scotland cricket team playing at international level, so I felt no disloyalty staunchly supporting the England team, especially when it was captained by Scotsman Mike Denness. Fortunately, perhaps, in this World Cup, Scotland are in a different group to England, so there can be no direct competition until the semi-finals. Sadly, but not unexpectedly, and barring miracles, results so far mean Scotland won’t progress that far. So dare I say it: come on England!