On Friday 9th November, for the first time, Haywards Heath Golf Club will host the annual Motor Neurone Disease Association Quiz Night. Ironically, it is an event that Doreen and I have supported staunchly for the last 13 or 14 years. I say ironically because for most of that time we knew little about MND, and had no contact with it apart from the quiz night. Those who believe in omens etc. might suggest that perhaps I had a premonition of my own future diagnosis.
There was a further touch of irony in that, on my first attendance, I won a raffle prize: a Chilean rainmaker. The irony, in this case, was that I was at that time, and until I retired, the Operations Director at South East Water, and south east England was about to enter 2 years of severe drought. We made use of the situation for some positive PR for both organisations with a joint MNDA/South East Water light-hearted news article, printed in the Mid Sussex Times. The quiz organisers have not changed in all those years, which demonstrates the dedication of the volunteers within MNDA. I hope those who can, will support the event. I shall be there, as usual, but purely as a contestant.
Our transfer up to Nottingham has made some progress as I have now been referred to a consultant neurologist there, and have my first appointment arranged. For the moment, however, I am still participating in the clinical trials in Brighton. There is one major visit left in the trial, including more major blood-letting and a lumbar puncture, schedule for late November. I’ll go to Brighton for that but will then transfer to Sheffield hospital for the remainder of the trial. The parallel MRI trial being run by Sussex University requires me to have one more scan, in December or January. As we have yet to sell our house in Cuckfield (viewing highly recommended!), I should still be around to complete that before we finally move.
The most noticeable signs of deterioration recently have been in my hands. I now have two largely unresponsive fingers on my left hand and one, partially, on my right. Previously simple tasks like buttering my breakfast toast are becoming more awkward. Stairs are more and more of a challenge, while getting up from a chair is increasingly more of an effort.
As physical activities become progressively harder, I am exploring the various disability aids that are available, and bought a number of items recently. These included a set of four furniture raisers, which I’ve put under the legs of my favourite TV-watching chair up in Nottingham. The additional 5-6 inches of height makes it much easier to get up from a seated position. These particular items are grey plastic, and fan out at the base to give a more stable platform. They are marketed as ‘elephants feet’ as they do look quite a lot like them. Our 4 year-old grandson was somewhat bemused recently when Doreen visited without me, and my absence was explained by me being busy putting on my elephant’s feet!
My daughter has tried to explain my growing disability by saying to him that I have ‘wobbly legs’, an explanation which seemed to satisfy him. While at a T20 cricket match at Trent Bridge in the summer, and sitting on the front row, an inquisitive 3-4 year-old became very interested in my stick and wanted to know what it was for. Borrowing my daughter’s explanation, I said I needed it because I had wobbly legs. This only heightened his interest as he began to pace up and down in front of me, examining my legs from all angles in search of signs of ‘wobbliness’ until his mother called him off!