MND was in the news again this month with publication of a Glasgow University study suggesting an increased risk of developing neurological problems, such as MND, in former international Rugby players. The study does not prove a causative link so other researchers remain cautious. My former golf partner, David Port, sent me an article from the Daily Telegraph in which ex rugby union international, Doddie Weir, expressed his own views, welcoming the study but suggesting more research is needed to understand MND before taking precipitate action. I am also indebted to David for sending me a copy of Haywards Heath Golf Club’s excellent centenary book. Thank you.
An article on former rugby league star, Rob Burrow (see: https://www.bbc.co.uk/sport/rugby-league/63235539) introduced a 30-minute BBC documentary on how MND is affecting his life. It was aired on 18th but is available on iPlayer. It is so sad to see someone, at just 40, wasted by MND. He refers to his problems with acute joint pain, which hasn’t troubled me greatly until recently. Muscle wastage around my shoulders means the joints are not being held together effectively any more so they become displaced, sometimes quite painfully, especially from using the computer mouse. I have been taking codeine+paracetamol regularly for some time, but this month’s MND clinic added application of ibuprofen gel, 3 or 4 times a day. Stronger painkillers are also being considered.
In my last blog I wrote about the NHS technology team installing a ‘head mouse’ so the computer cursor follows my head movements, and if I hover at any point it ‘clicks’ the mouse button. I had hoped to be able to say that I’ve mastered the system but I haven’t! It works well with big buttons but fine control on, for example, the various scroll bars on web browsers, Outlook, etc. are really difficult to cope with. The technology team have promised to return and try other options. Wheelchair Services also visited this month. After discussing my difficulty using the wheelchair controls, they also suggested using head movement controls but I have heard nothing further as yet.
The replacement shower/commode wheelchair, which arrived last month, but still didn’t quite fit over our toilet, has had larger wheels fitted. That worked, so problem solved? No. The optional folding arms on the toilet, helpful when I could still stand up, prevent the new chair from going far enough back. To be fair, the chair supplier’s rep did say the arms would have to be removed but Closomat, the toilet supplier, insisted the arms don’t come off! I found this hard to believe so Bridget from Community Neurology called them, and she was told the complete opposite! It then took time to prepare a quote, which had to be paid in advance. Their latest email says the job has been logged on their system with no timescale for completion. So yet another month passes and I’m still waiting.
We did have one minor incident this month when, part way through my morning washing/dressing routine, the gantry hoist suddenly stopped working in mid lift. Fortunately, I had already used the bathroom! Partially supported by the hoist, I was manhandled onto the bed. A call was made to report the break-down and we were promised a visit that day but with no time given. We still have the mobile hoist as a backup, but when it was wheeled in, the battery was missing. I was not too surprised as the battery has to be removed for recharging, but where was it? It used to sit in its charger in a corner of our/my bedroom but it wasn’t there. It had not been used since the gantry was installed over four months earlier. Doreen had no memory of where it was or even what it looked like. Fortunately, our son, Adam, was staying with us at the time. I was able to describe it to him so he started looking in all the most likely locations but to no avail. I reconciled myself to a long wait and had breakfast in bed for the first time in decades. Meanwhile, Adam started searching the rest of the house. He eventually came across the battery and charger sitting in a corner of what is now Doreen’s bedroom. “Oh!” she said, “Is that a battery? I wondered what it was”!