June started with the sad news of the death of Rob Burrow, former rugby league star and MND campaigner, who was diagnosed with the disease in 2019. Previous blogs have praised him, and the incredible efforts made by his friend and former team-mate, Kevin Sinfield, to raise money for MND research. For more, see: https://www.bbc.co.uk/sport/rugby-league/articles/crggwy1wp96o .
It has been a busy month with medical visits. Wheelchair Services arrived, as planned, to review the problems with my wheelchair. They quickly came to the conclusion that I need a chair with more tilt and better head support, but it will take 2-3 months to get it. If it’s that simple, why couldn’t they have decided that months ago? Meanwhile, I still have a chair I can only use comfortably for 2 hours.
Specsavers made their home visit to test my eyes. I await my new glasses with eager anticipation. My Physio, Fiona, managed to break the impasse that I can’t have a better neck collar unless I can get to the hospital, but I can’t go there unless I have a wheelchair with adequate head support. She organised a video call with one of the hospital neck-collar team, and she was here with me to show them the problem. They still can’t provide their most sophisticated collar without a hospital visit but I do now have two much better collars. Meanwhile, my problem with the persistent night-time ventilator alarm hasn’t progressed this month but I am managing the situation still with regular haircuts and pugilistic nose plasters!
I was issued with a new, bigger bed this month. Like my old bed, it has a mattress which periodically inflates in different areas, changing the pressure on support points, to help prevent pressure sores. Unfortunately, soon after delivery, it began to alarm loudly, showing a ‘low pressure’ message. I had previously referred to the ventilator alarm as ‘the band’; now we had a rhythm section, too! The combo made sleep difficult. The Red Cross arrived to fix it, two days later, while I was having my hair cut in the kitchen by Taffreace, my carer that morning. The straps on my ventilator mask get in the way during hair cutting and washing so I use a simple mouthpiece which I grip with my teeth. While Taffreace was away, directing the Red Cross man, I relaxed but, being tired, I dozed off. I woke up suddenly to find I’d relaxed too much. I had lost my grip on the mouthpiece, which had fallen out. I couldn’t breathe, nor could I move nor call for help. At that moment, Taffreace magically reappeared and replaced the mouthpiece. Another close call!
June was certainly a wonderful month for men’s sport. The US Open golf tournament, in a gripping final round, saw Northern Ireland’s Rory McIlroy beaten into 2nd place by a single shot. In the T20 Cricket World Cup’s initial group stage, England only just progressed by squeezing past Scotland on Net Run Rate, but then went on to reach the semi-final, being well beaten there by India. The Euro football saw Scotland denied a clear penalty in their final group game (where was VAR?!) which might have seen them progress. England did progress, despite scoring only 2 goals in 3 games, and somehow scraped through their next game to reach the last 16. The tournament continues!
With better weather this month, I finally made it into the garden for a family BBQ. It was really lovely to be outside on such a beautiful day. My second outing in the month was even more special. Lesley and Bridget, from Community Neurology, came here late morning on another gloriously sunny day to help my carer transfer me to the wheelchair. With three helpers, and Doreen, our little group broke even newer ground for me, going beyond the boundary of the house for my first pub lunch since Covid lockdown four years ago. Bloomin’ marvellous!!
