The annual Motor Neurone Disease Association Quiz Night, held this year at Haywards Heath Golf Club, was a great success, with 15 teams of six battling it out. Well done to David Wilks for setting an excellent quiz, and to the bar and kitchen staff for looking after us all so well. Our team threatened victory, taking the lead with just two rounds to go, but faded at the end, finishing in a creditable joint 4th place. While at the quiz, I was touched by the number of people who came to talk to me, and with a strong message to keep writing. Thank you, all.
I must also mention our close friends in Stamford, Lincolnshire, Clare and Roger Neal. Clare organised a coffee morning in their house in aid of MNDA, persuading local bakers to donate cakes. She also acquired (and donated) raffle prizes. The 25 people who attended contributed nearly £500, but generous donations by those who couldn’t be there took the total to a phenomenal £917.
Our transfer up to Nottingham has made further progress. During our last visit, I had my first appointment with the MND support team at the Queens Medical Centre in Nottingham. The QMC is a regional centre of excellence for MND care, and during that one visit, I was seen on time, examined by the consultant neurologist and then by a respiratory specialist nurse. I met speech and diet specialists as well as the MND nurse and the MND centre co-ordinator. More blood was taken(!!), further appointments made, and all that was completed in an hour and a quarter.
Last week I had my last major visit of the clinical trials, in Brighton. As well as the usual 15 test tubes of blood, I had my final lumbar puncture, this time taking only 5 attempts! There is a short follow-up this week, also in Brighton, but subsequent hospital visits will all be in Sheffield. From this point, the hospital visits become less frequent and less intensive although no doubt they will still want me to miss breakfast and take an armful of blood each time!
Physically, my deterioration continues slowly. There are no sudden changes but I do notice certain tasks becoming more difficult. My handling of cutlery, for example, is increasingly clumsy. And while my sense of balance is still good, the weakened muscles in my legs make it impossible to recover from the slightest trip or stumble. I had another fall recently, while leaving our daughter’s house, landing on the same elbow that took the brunt of my previous fall at the bridge club. Perhaps I should wear knee and elbow pads like a skateboarder!
One thing that affects many people living with MND is loss of ability to speak. Modern technology allows use of text-to-voice simulators. Stephen Hawking’s electronic voice was an early example of this technology. Nowadays, these machines have more natural voices and can even be taught to simulate your own voice. My voice is a bit croaky but is otherwise still normal, but in anticipation of losing it, I have been busy recording it using a system called Model Talker.
Model Talker requires you to record 1600 pre-set phrases. Each phrase is ‘judged’ by the system on volume, speed and clarity using a traffic light system. I have no problem achieving ‘green’ on volume and speed, but the software is American and seems to struggle with an English accent. I frequently have to repeat the phrase several times just to achieve ‘amber’! It reminded me of the classic YouTube clip of two Scotsmen in a voice-activated lift. If you haven’t seen it I would recommend it. See: https://www.youtube.com/watch?v=MNuFcIRlwdc. Goodness knows how Model Talker would cope if I still had my original Aberdeen accent!!