Saturday, 20 October 2012

Walking to defeat MND

A week ago, Jane and others were pushing me round the grounds of Blenheim Palace. We were taking part in the annual Oxfordshire MND Association sponsored "Walk to d'feet MND". As last year there were a good number of participants (about 90) and we were blessed with sunny if not balmy weather. The leaves were just starting to turn as you can see across the lake - like Ashburnham Place designed by Capability Brown.

As always with these events, the best thing about them was the company. In this picture I'm being pushed by
our friend Penny whose husband died last year of MND, while on the far right is Matt whose mother died only a few months ago. Talking to me, to the right of Jane, is Jenny Rolfe, the fab OT who works at the MND Clinic in Oxford and who sorted out for me my tilting wheelchairs. To her right is Rachael Marsden, the nurse and presiding genius of the Clinic. They are two of the assets that makes the provision for people with MND in this area so positive. It struck me that part of the centre's secret was encapsulated by the fact that one consultant, the nurse i/c and the main OT were all there on a Saturday in what might be called a work of supererogation, i.e. above and beyond the call of duty. For them it's more than a job, or a career; it's more like a vocation.

Second in from the right here (with the balloon) is Lesley, our indefatigable and endlessly efficient branch secretary. She's one of a group who not only organise such events for us and our families and friends - and, as significantly, is one of those available to visit people with MND from the point of diagnosis onwards. As you'll have gathered from this blog, there is NO way that the professionals, spread as thinly as they are and with resources increasingly squeezed, there's no way that they can respond even to the need of such a rare condition as ALS/MND. So the potential for sensitive Association Volunteers (AVs) to support individuals and families in the frightening reality of the disease is huge. It doesn't always work; personalities may not click. But usually it does.

I must also mention Peter, with the cap on the mini-scooter, with his two glamorous women behind him. He has moreorless completely lost his voice, but he certainly has by no means lost his sense of humour. He keeps me plied with often outrageously non-PC jokes by email. To give one repeatable example which I enjoyed recently:
- An elderly man was stopped by the police around 2 a.m and was asked where he was going at that time of night.

The man replied, "I'm on my way to a lecture about alcohol abuse and the effects it has on the human body, as well as smoking and staying out late." 
The officer then asked, "Really? Who's giving that lecture at this time of night?" 
The man replied, "That would be my wife." - Occasionally Peter drops in a googly in the form of a serious or uplifting reflection on the meaning of life. He used to be a teacher. I bet his lessons were fun!

Oh yes, and did I mention the afternoon was fun too. At least I enjoyed it. Well, I'd have been ungrateful not to have, being pushed up hill and down dale by a succession of nice women, wouldn't I?


  1. Hi Michael,
    Judging by your comments you had a pretty good time. From my experience it's such team work that makes life worth living and work worth doing. Good to see that you still get out and enjoy the company of others, I feel sure they too enjoy seeing you and Jane.
    I have just returned from hearing children read at our local school, something that from experience I know teachers find hard to keep on top of. The contact with children is a privilege and reminds me of what it was first attracted me to teaching.
    Last night I was with a group of profoundly disabled who meet fortnightly as a Group called Focus Church. It comes under the umbrella of Fresh Expressions and caters for individuals who would find it difficult fitting into your traditional church setting.
    Having said that maybe having someone getting up screaming and peering straight into the eyes of the person delivering a sermon would liven things up now and again. I certainly felt like doing so yesterday at our 11 o'clock service. Goodness knows what the 8 and 11 year old cubs and brownies thought. A good start which degenerated into thorough boredom. Rob

    1. What a shame and missed opportunity, Rob, isn't it, when you have children and their parents there and reinforce the message that church is boring and irrelevant? Do pray with me that the new Archbish will jolt the whole Anglican church out of its complacency - I know there are many exceptions!