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!
Alistairx
Hi , just to say i think your amazing in what you do . My father has MND and i know life can be hard. Keep up the good work x
posted by kerry on February 3, 2012
Alistair – I have been listening to the taster tracks and I’m seriously impressed. As I am a Ludite, I will have to wait until the CD’s available before I can buy, but it’s on my shopping list. Love to you, Alice, Finn and Freya xx
posted by Lucy & gang - part of the Walthamstow Massive on February 3, 2012
Hi Alistair. Great to read about how you had fun with filming the music videos. It’s amazing how much you’ve done and truly inspiring how much you’ve achieved. Sorry to hear that the MND is so unrelenting. It must be so hard to be ever increasingly reliant on others and, if you’re anything like my Dad who had MND, you might be a bit upset and grumpy about it at times. It would be understandable if you were. The DiPALS trial sounds interesting. I hope the treatment has some positive effect – and helps to alleviate some of the difficulties you are facing. Looking forward to those music videos – especially the star turn of your powered wheelchair!
Lynne
posted by Lynne on February 4, 2012
Hi Alistair, I have a very dear friend, Lara, with MND so I’d be really interested in how you get on with the ventilation technique – or anything that you think can help.
I am so impressed by your courage and strength of spirit, you are obviously a wonderful guy! I think you may know a friend of mine – Adam Taylor – who lives in Walthamstow. He told me about you when my friend got diagnosed. She is finding it very difficult to accept but is unbelievable in her love of life and positive living like you.
All the best
Sue x
posted by Sue WHeat on February 18, 2012