Monday, 25 June 2012

The Supercar Day

Yesterday we went to Dunsfold Park Aerodrome (better known as the Top Gear test track) for The Supercars Event. It's a charity day for The Childrens' Trust where owners of performance cars give their time and tyres taking people on laps of the circuit. We had booked the boys for 2-30 and arrived at 1pm. I had expected about 10 cars or so, but there were more than that number of Ferarris! There must have been 30 or 40 cars, including lambourghinis, Mclarens, GT40s and Aston Martins and not to forget the TVR Tuscan like I used to have :-(  . I had emailed the company organising the event last week to enquire about access and the MD, Bachi had responded saying they would do everything possible to get me in a car. I knew it wouldn't be possible but it was a kind offer.

The boys went off to choose their cars and while doing this, Tracy got chatting to a marshall called Adam about our situation and he was absolutely brilliant. He let us into the paddock and stayed with us all afternoon! He made sure I saw the boys in their chosen cars, arranged a group photo with the cars after and then introduced us to the drivers of some of the best cars. So the boys got to sit inside some serious exotica including a Lambourghini Aventador (that'll be £300k sir) and a £1M Ferarri Enzo. I felt like the event was for MY benefit. Daniel and Luke had their laps in an Aerial Atom (not the most expensive car but pretty exhilerating) and jake chose a 430 spider driven by a very nice chap called Dave.

The Enzo owner was also a lovely chap but I was a bit worried as I had parked the wheelchair 6" away from his car and it was still set on full speed as he approached to say hi. I knew that he would do the usual greeting gesture of touching my right hand which is always well meant but often gets the person's foot run over as they inadvertently push the joystick forward. This time I was less worried about him limping for a week and more worried about footrest shaped holes in the carbon fibre of his motor! Thankfully it was a light touch that only moved me a fraction.

The boys loved it and it was their first experience of circuit driving and although I don't think any of the drivers were pros they seemed to be giving it plenty of beans. We were SO lucky with the weather; if it had been wet it would have been stressful and pretty miserable. But it was one of the most enjoyable days in the last year. It's an annual event for a great cause so put it in your diary for next year.

Just checked your bank account Luke; only £999,974.54 to go


Monday, 11 June 2012

Still Here

Again it's been a long time since posting last. I guess it's a combination of not much happening and not wanting to post another whinge about everything. So without going into great detail, outings have included a cinema trip with my sister to see Salmon Fishing in the Yemen, a couple of trips during the 10 days that was apparently our summer to bushy park and a visit to my MND mate, Liam. So the new car isn't getting much use at the moment.

Our 'summer' was a chance to get outside although I really struggle with 28 degrees. But it seems it's that or 14 degrees and wet. The recent Jubilee celebrations were a welcome change to the repetativeness of the usual routine. As anyone who read my facebook comment will know, I wasn't able to join Tracy and boys on their trip to watch the Jubilee Pageant because of the transport logistics and the likelyhood of seeing anything from a wheelchair. Obviously watching it on TV was drier and warmer but it was yet another event which would have been nice to experience and share with them.

On Tuesday we had our street party and despite being the wettest day of the weekend I was able to attend, sheltering under one of the many gazzeebos which had been erected. It was well attended but unfortunately the rain eventually dampened most people's spirits by about 5pm although I was one of the few that made it until 9pm (determined to make the most of an event literally on our doorstep)

I have just reached the 6 year mark according to my stick man on Patients Like Me website. After a fairly typical steady decline over the first 4 years, my FRS has been static for the last 2 years. My score of 12 primarily propped up by respiritory function (although I reckon my FVC is well below 40% I don't use any ventilation or experience shortness of breath yet) I don't know why my progression has almost halted but I am not complaining as I know it won't last forever. There has been deterioration in the last 2 years, not reflected in FRS but still impacting life significantly. But it's still strange why this is happening. One example of a subtle change was experienced yesterday. Lifting my head up after dropping it forward to swallow has been increasing in difficulty but yesterday was the first time I just couldn't do it. I have already devised a pad to prevent my chin dropping completely but I think I will have to get some type of head tether. Another stylish accessory!