Friday, 25 May 2012


She warned me, and she was right. Rachel said I'd cry if I watched it, and I did. It was last week's episode of BBC's DIY SOS called "The big build - Enfield". It was about Eric Rivers who has a rapid form of MND and his wife Davina and their three children. It was obviously filmed last November. Their home is a two-bedroomed terrace in Enfield. Their youngest daughter had to sleep in her parents' bedroom, and all of them were grieving for a family life of which Eric's MND had already robbed them.

The programme showed the DIY SOS team moving in, supported by a massive outpouring of goodwill from local tradesmen and love from their friends, and transforming their home in just over a week. His daughters had said the priority was to make their home good for their dad. In the event, the team created an extra bedroom in the loft and a dining room extension on the back. Like us they made a wet-room and put in a through-floor lift. Eric's repeated statement was "the greatest gift we have is time" - and that's what the SOS team had given him - more time to enjoy with his family. Unfortunately it's too late now to see the programme on iPlayer, but you can see short extracts and more about it here: Clips from Enfield.

The Rivers experience a problem shared by many families plunged into MND or other disability - finding their home quite unsuitable for their rapidly disabled member. Most families don't have an incredibly persistent friend who tweats the BBC and the presenter until they agree to refurbish their house completely - not that anyone would begrudge the Rivers' family the help they received one tiny bit. In fact one's glad for all the good fortune and help that others receive. We were fortunate enough ourselves to have been given sufficient capital to adapt our home before we moved in. Most people are struggling to get adaptations done while they're in situ and as their needs constantly increase. Yesterday we went to Bicester Garden Centre for a meeting our local MND Association branch. There were lots of us there. We met a couple who were having to sell their family home to move into a flat, while another of our friends was faced with dismantling adaptations and a wet-room which an incompetent contractor had messed up and failed to complete before his wife had died of MND.

Our area is well supported by the Oxford MND Centre, but many areas are not so well served - which makes it all the more important that there should be a nationwide provision, not only for MND, but also for the other progressive neurological conditions, such as ataxia and muscular dystrophy, which no one expects and for which no one is prepared. Most people do not have the luxury of time of which I have been given much. As Eric Rivers said, in situations such as his, "the greatest gift we have is time". Let's give people like him, as much quality time as possible. It will be an incalculable present.

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