Friday, 5 June 2009

Mobility Roadshow

The problem with not having blogged recently is that I have a backlog news and views to impart. For example, I have been beset by community physiotherapists, speech therapists and OTs who have all made eminently sensible suggestions and any one of them would have made for a good post. I also made the journey to King's Hospital to see Dr Rose and his team where I was assessed and plans were drawn up, strategies devised and letters arranged to be written. Dr Rose also, and most importantly, helped me to get a handle on what has been happening to me regarding my Muscular Dystrophy.

The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.

I need a new wheelchair. More about that soon.

Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.

It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.

In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.

In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.

We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.

More soon.