Christmas seems like a very distant memory now and I’ve found myself reflecting on a ‘difficult’ January. I suppose my last statement is a little obvious as each month we live with MND is more difficult than the last. My ever diminishing strength, total reliance on others and sense of being trapped in a failing body have got the better of me at times and being an ‘incurable optimist’ is definitely something I aspire to be and only now achieve with immense effort.
In December I went to the MND Centre in Oxford for a three monthly check up to discover that my breathing had deteriorated significantly. As a consequence I was asked whether I would be interested in a trial being run by Sheffield University which aims to assist respiratory function and life expectancy. The DiPALS trial will use conventional non invasive ventilation techniques in combination with a diaphragm pacing device to try and maximise and prolong patients breathing. I have now signed up for the trial and start my treatment and monitoring later this month. Let’s hope the trial is successful and I will keep you posted on how I get on.
Work is continuing here on the official launch of the ‘Alistair The Optimist’ CD. We now have a date, loads of lovely CDs, a promotion campaign and two beautiful music videos (almost ready) and a ‘making of the video’ film on it’s way too!! We filmed the video for ‘In The Wake’ a couple of weeks ago and had I had a great time with the 20 cast and crew. My powered wheelchair is the star of the show and the ‘rushes’ look amazing. I can’t tell you any more details at the moment as I’m sworn to secrecy – sorry. All very exciting indeed!