Wednesday, 28 July 2010

A whinge seems overdue!

With my speech now completely unintelligible, I really don't like meeting people. This applies not only to strangers but even some people I know who I don't see very often. I have mentioned before about being treated like an idiot when you are in a wheelchair and can't speak, but I am not referring to that here. There is no criticism here. The issue here is mine. I dislike what I have become. We all know that MND only has physical effects but much of what defines you is physical and it is certainly 99 percent of how other people perceive you initially. Most people are put into an uncomfortable position when meeting a disabled person, they don't know what to say either verbally or with body language. They are no longer in their comfort zone. I was exactly the same. Every disabled person must be aware of it and most will probably do as I did and diffuse any awkwardness by acknowledging their disability, even joking about it. Thereafter most people are able to relax and will interact normally. The problem I now have is that those techniques are no longer possible, well certainly not as an instant response. If I have my communication computer with me and I have an opportunity to type some witty dialogue then maybe I can start to get them to see just a glimse of the former Steve Evans. But in most situations I can only do my lopsided smile and grunt. And how can you expect them to respond to that?

My recent experience of meeting F1 driver Jenson Button was a particularly frustrating example. Having come over to me specifically and saying hello, my response would have quite understandably have left him with the impression that I had been brought along for a day out of the care home, having been dressed in my 'special racing car' shirt because "you might meet that man off the telly, you know, that one that drives the fast brmm brmms, you like him don't you ". I am trying to make a joke of it now but I have to say it was acutely embarassing and frustrating in equal measure.

Even for people that knew me pre MND I think it is difficult for them to convince themselves that inside the wasted body that they see slumped in a wheelchair, behind the gaunt face of a virtual mute who struggles not to drool, there is me.

There are only a few people that still talk to me like they used to. This isn't a criticism of those who don't and can't. I just hate the fact that I am becoming a stranger to people I know.

Friday, 16 July 2010

British Grand Prix

Last weekend I went to the British Grand Prix with my mate Stuart. We had gone in 2008 and seen a fantastic race in the wet with Hamilton overtaking through the field to victory in what turned out to be his championship winning year. And although I shouldn't admit it, we had the extra satisfaction of seeing Ferarri spin off more in one race than Mclaren had all year!

As in 2008 we had decided to go for the qualifying and race, missing the Friday practice. Driving to Silverstone and back on two consecutive days was quite enough. I had managed to arrange my morning carer to come at 7-30 to give us enough time. We knew from before that disabled badge holders bypassed other traffic and used the Officials route. It didn't really matter as when we got there on both days there was simply no traffic! Considering the event attracted 160,000 people, it was bizarre.

We arrived just as the mornings final practice session was ending so we made our way to the grandstand to watch the Formula Porsche before the F1 qualifying. We were in the Woodcote B grandstand which gave us a reasonable view of Brooklands, Luffield and the finish line.

We knew from Friday's practice that we were unlikely to see Jenson or Lewis near the front but despite Lewis achieving a respectable 4th, it was very disappointing seeing Jenson end up in 14th.

We spent the remainder of the afternoon watching the GP2 and GP3 from a couple of other locations around the track. As we approached the final race we decided to head back to nearer the entrance. On the way we passed a growing crowd of people standing outside an enclosure where Lewis Hamilton was rumoured to be arriving shortly. Having met and got Jenson's autograph the previous weekend I was keen to get Hamilton's for the boys, maybe getting the Mclaren T shirts bought for the boys earlier in the day signed and even a photo.

Things were looking good when the security guys let us inside the enclosure for an unrestricted view.

 So we waited, and waited. After about 20 minutes, a minibus turned up and out stepped Lewis Hamilton. Despite the crowds all shouting for autographs he was ushered straight indoors to what was obviously some sort of PR event with promoters. the minibus was waiting so everyone stayed, hoping that he would have time to meet 'the fantastic loyal fans'. 20 minutes later the PR event finished and Lewis emerged, looked briefly at the crowd and vanished into the minibus and left to the sound of an understandably discruntled crowd booing.

I am sure he had a hectic schedule, but it would have taken 5 minutes to do a few autographs, even just for the kids. In every interview he talks about the fantastic support from his British fans, but the one opportunity he gets to acknowledge that support with some sincerity, he decides that he can't really be bothered. We weren't impressed and neither were several hundred others.

I appreciate that The Festival of Speed is a more relaxed environment but I don't remember him doing autographs there last year either. We decided we would reserve our support for Mr Button the next day.

Race day was a scorcher. As is commonplace, wheelchair seating is at the lowest level and furthest forward position in the grandstand which means little or no shelter from sun. We arrived in time for the drivers parade and the ever impressive Red Arrows display and before we knew it the warmup lap was under way.

As the red lights go off you appreciate the difference between being at the race and watching on TV. The noise as 24 F1 cars hurtle towards the first corner is fantastic. The atmosphere is just brilliant.

I am sure that if you are interested in the following 2 hours you will already know the details so I will spare you reading them here. But I will just mention the enormous cheer that could be heard above the noise when Vettel went off on the first corner. Very unsporting I know but I guess the previous weeks 4 - 1 thrashing hadn't been completely forgotten and he has become rather schumacheresque of late with his arrogant driving style and habit of blaming everyone but himself

Anyway, it was a pretty good result in the end with a second and fourth place for Mclaren. There wasn't much else to see after; the GP2 and GP3 races had annoyingly been run very early that morning. Instead we headed to the infield area where there was a stage on which various drivers were going to appear. However, the wheelchair viewing area at the front had no dedicated access, so unless we had arrived first and were prepared to stay until the end, late into the evening we would have had to get through a crowd of 20,000! We decided not to bother and made our way home.

It was a great weekend and worth all the effort. I want to say a big thank you to Stuart. Not just for the 10 hours of driving but for all his patient assistance positioning drinks, scratching itches, wiping stinging eyes, repositioning ear plugs and countless other tasks. Thanks again.

Thursday, 15 July 2010

Not Being Ripped Off

recently I posted an entry complaining about the ridiculous price of products for the disabled. I wanted a simple remote control operated with 'buddy' buttons which could be positioned and pressed with my foot or nose. The only product available to purchase was this

so I went about designing my own and with the help of Chris (production) and Stuart (installation), here it is.

the 3 sockets connect to 3 of the buttons on the programable remote control. By teaching the remote from another remote, the 3 buttons could be used to control any infrared remote controllabe device. I only have one switch at the moment, but any button type could be used to suit the user.
it has saved me at least £400

Monday, 5 July 2010

Goodwood Festival of Speed

On Saturday  I took the boys to the Goodwood Festival of Speed with my sister, brother in law,  niece and my mum. I went last year with friends Adam and Stuart and had managed to get a privileged view of Lewis Hamilton doing donuts in his Mclaren just a few feet away. As we left the festival I remember feeling really sad that I hadn't taken the boys for them to have been part of the experience and knowing that I may not get another chance.

So this year I was determined to remedy the situation. The Festival of Speed is not the easiest place for wheelchair bound viewing, or for children. The straw bales lining the entire hillclimb track obscure the view for anyone under 4 feet. The wheelchair viewing platforms are always full and certainly wouldn't accommodate my entourage, only one grandstand is wheelchair accessible and getting to locations on different sides of the track requires you  to coincide your crossing with the breaks between track activity. So you are at the mercy of kind hearted marshalls bending the rules and letting you into officials only areas.

Despite this I wanted to make ammends for last year so along we went. This years quest to replicate last years experience ended up with a lot of walking and not much watching. The information desk lady was adament that there was no way any assistance could be provided to get us in the right place at the right time to meet the drivers. Explaining our circumstances only resulted in being told that ours was just one of many similar requests. If its that bloody common maybe they could set aside half an hour to let us all meet them.

We had already established that Lewis was driving the following day. The boys were initially not impressed by this but after explaining that Jenson Button, who was appearing, was the current world number one driver, they were satisfied that they hadn't been short changed!

The only place I was confident we would see him was at the end of the hillclimb circuit which I knew was a good 15 minute treck up the hill and through the woods. The constant plumes of dust kicked up by the rally cars speeding through the woods on the right and the shuttle bus tractors on the left made the journey fairly arduous.

Having reached the top it was time to negociate with the marshalls to gain access to inside the paddock. Unfortunately unlike last year they wouldn't let us right inside but got us up to the gate instead. However they wouldn't bend the rules sufficiently to let the boys in.

A few minutes later Mark Webber arrived in last years Red Bull and proceeded to vanish behind a wall of tyre smoke as he donutted the car for the crowds entertainment. A couple of minutes later the star of the day arrived more cautiously in a priceless Ayrton Senna Mclaren. Jenson Button emerged and was immediately surrounded by media and VIP guests invited into the paddock. The marshalls made a point of getting him to come over to say hello. He seems like a genuinely nice chap, he asked if I was enjoying it, it was frustrating not being able to talk to him and tell him he had better bloody well win next week when we come to silverstone. My sister got him to sign hats and programmes and got some good pictures.

I think that I was more disappointed than the boys that they hadn't got to meet him, but they seemed happy with the autographs. I was disappointed that having got back a year later I had got so close to achieving what I had wanted, but couldn't quite manage it.
We made our way back through the dust and down the hill to the main festival site where the boys and their long suffering cousin, Alisha had a turn on the off road go karts.

Massive thanks to Sue, David, Alisha and mum for making the day possible; I am sure it wasn't the ladies first choice of weekend pastime, and I think David would have liked to have seen more cars and less dusty forest. So thanks again.

Friday, 2 July 2010

Cheers mate

My mate Chris, is currently in training for his half marathon to raise money and awareness for MND. Have a look at

for all the details.

As many of you will know, me and Chris have been mates for ages; around 20 years I reckon over which time we have many an adventure and consumed many more pints of ale. Chris was single handedly responsible for my expensive tastes in TVR cars. It was him buying his MR2 in 1996 that made me think I should endulge myself and not just spend everything on mortgages, pensions and savings. In hindsight it was a wise move and I am glad I didn't talk myself out of it with a promise of treating myself in my forties. Anyone reading this who is trying to justify a similar indulgence to their wife or girlfriend or indeed to themselves, please feel free to use my circumstances as ammunition.
Chris was also responsible for persuading me to jump out of a plane with no more than a fifty year old WW2 parachute and training which comprised of jumping off a crate and shouting "one thousand, two thousand, three thousand, check canopy" I'm not talking here about a tandem jump, but me, alone, dangling under an ex-army parachute high above the Buckinghamshire countryside (uncomfortably close to the M40). Although, unlike Chris I didn't pursue skydiving as a hobby it was an incredible experience.

Another unforgettable experience was our American Roadtrip. The formula was one flight to San Francisco, one flight from Orlando and one Hire car. Everything else was decided en route. Had blogs been around then it would have made great reading, but as they weren't, here is a summary.  We discovered;

that just because you can see the Golden Gate Bridge doesn't mean it is possible to reach it on foot in under 2 hours.

that you really can't do justice to Yosemite National Park in ninety minutes

that you should always remember to remove passport from jeans back pocket before embarking on swimming in every private swimming pool on route from final bar of the evening to that nights motel.

that you can't dry underpants in a microwave

that you can dry underpants by hanging them from rotating ceiling fan

that you don't drive at 95 mph on interstate

that you DO always add the word 'sir' to the end of every sentence when talking to an interstate patrol officer

that you don't drive too slowly past run down shacks in Alabama with their gun toting owners on the verander, when in a hire car on California plates

that when in some southern state, shanty town bar, you agree with great enthusiasm when the bar owners response to discovering you're from England is "F**k the Queen "

that a diet of food consisting exclusively of McDonalds and a toilet in close proximity to your sleeping quarters is a combination to be avoided

That straying outside New Orleans safe French Quarter and playing pool with two armed and drunk guys from Baton Rouge, without letting them win a single game won't necessarily result in you being murdered.

that standing directly under a lampost in a thunderstorm is a very bad idea

and finally
that if you are going to board an aircraft 25 minutes after all the other passengers, don't do it on a packed Boeing 747

There have been less successful although no less memorable holidays including the ill fated Bulgarian skiing holiday. No snow, a mysterious illness that everyone got which we named BulgaRIA (as opposed to BulGARia ) and the discovery that Bulgaria is the final destination of ski lifts and equipment after Italy have finished with it. The only saving grace was us managing to coincide our visit with a meltdown of the Bulgarian economy which meant we could buy beer for 20p. Well we could until they decided to re-price in dollars.

Anyway, enough reminiscing. Chris is a top bloke and great friend. He will hate me for writing this, but its my blog, so tough!

cheers mate