Saturday, 28 November 2009

Our boys don't do LSD.... Honest

A Story by Luke (Age 8 3/4)

If Tim Burton happens to see this, Luke is open to offers on a film deal as long as he can play the rabbit, and Johnny Depp plays the postman
 (as requested by Luke's agent..... Tracy )

Friday, 20 November 2009


We saw Muse at the O2 last Friday and as usual they put on a fantastic show. We first saw them about 10 years ago when they were supporting Skunk Anansie (who have just reformed) at Brixton Academy. We have since seen them a number of times at ever larger venues including a gig when they were supported by a very unknown Coldplay! What is impressive about them is the musicianship not only of frontman, Matt Bellamy but of the bass player and drummer who contribute equally, resulting in their often anthemic songs.

We had driven to avoid the chaos and logistics of getting back by train on the wheelchair late at night. Although we had left early in the afternoon, the combination of rain and Friday afternoon traffic made for a gruelling 2 hour journey. Arriving at 3 we made the most of the afternoon getting a late lunch before paying a visit to The History Of British Music " exhibition. We would have been happy to pay but it turned out our Muse tickets got us in free. Its an impressive exhibition with hundreds of pieces of memrobelia from the last 60 years. Original lyrics, guitars and stage outfits galore plus lots of interative stuff.

The O2 has great wheelchair access and helpful staff who get you to your seat without any hastle. And what great seats they were, no more than 30 feet from the stage. One of the few benefits of being in my position, and one that didn't go unnoticed by a man in the standing area who pointed out to us how lucky we were to have got such great seats.....!!?

Having got there early we were in time to see the support, Big Pink. Despite only recognising the final song,  they were pretty good

Muse came on around 9 and played for an hour and a half, here is the intro and opening song as seen by someone not lucky enough to be in a wheelchair!!

Full review here

Wednesday, 18 November 2009

MPH Show

Made the annual pilgrimage to MPH Top gear show at Earls Court a couple of weeks ago.

Apart from being a very entertaining live show and impressive exhibition it has particular significance as when I went for the first time in 2007 I had just been diagnosed with MND. So I spent much of the show contemplating if I would still be around to see it again a year later and whilst I'm pleased that I not only managed to make it in 2008 but also 2009, I still have the same thoughts each year. I'm determined to be there in 2010 even if I have to take a ventilator!
With the help of friends and brother in law I took the boys for the first time with predicable results. They loved the show and seeing the famous people from the telly, but were less enthusiastic or cooperative looking at the stands.

Trying to effectively discipline the boys from a wheelchair and with unintelligable speech is incredibly frustrating (and may get its own blog entry soon ) but uncle david is excellent at stepping when necessary and being suitably scary.
Jake is not keen on loud noise (unless he's generating it) so standing next to Tiff Needel orchestrating six supercars having their nuts revved off was not his idea of fun, but it was mine!

Kew Gardens

Can't stand to be stuck indoors on a sunny day so headed out this morning with the idea of going into London. Texted a couple of friends who work in town on the off chance they were free for lunch but by the time I'd reached the station had got replies confirming they weren't. Was going to go anyway until I spotted a bus outside the station going to Kew Retail Park.
I had no idea where Kew retail park was but guessed it couldn't be a million miles from Kew Gardens of which I'm a member so hopped on (figuratively speaking as in practice in was a cautious drive up the usual precariously narrow, steep ramp with a ledge at the top which tips the chair back to a point you  feel convinced its going to go right over).

Anyway 45 minutes later we arrive and as hoped, found myself quarter of a mile from main gate.

This picture was taken (and obviously subsequently Photoshopped) on a previous visit with the boys

Spent a couple of hours tootling round in the warm November sun, and despite the lift for the treetop walkway being broken (again) and not being able to get into the Palm House because double door wouldn't open, had a lovely afternoon.

The chap in the indoor picnic area even managed to correctly interpret my grunts and vague gesticulations and proceeded to retrieve my sandwiches from wheelchair bag. Even more remarkably, he remembered to return later to open the doors that the last remaining visitors had thoughtfully closed when they left!

Return trip fairly uneventful, partially thanks to remembering about the nails I had seen earlier strewned over a section of pavement. Had to miss first bus as it seems they can't accommodate a wheelchair AND a buggy and a woman with the latter had beaten me to it. The driver in the bus parked behind said he would be leaving 15 minutes later and let me get onboard to wait.

Then, as what must have been considered compensation for my delay, he proceeded to show me a porn clip his bus driver mates had loaded on his phone. Bizarre. I would rather have got the earlier bus. I'd seen it before!!

Sunday, 8 November 2009

Brighton Break

On Wednesday Tracy and I had a short break away in Brighton... Tbc

Don't treat me like an idiot

The combination of being in a wheelchair and having slurred speech leads most people to the conclusion that I'm mentally retarded and it is becoming one of the worst features of this disease. (I know there will be worse things ahead but it is still infuriating)

I was at the hospital yesterday for something non-MND related and had to put up with a doctor who made little effort to understand me and a nurse who although made more of an effort, talked to me as if I was a 2 year old.

People actually stop making an effort to understand what I'm saying because they have already decided it won't be relevant or important. So as well as the frustration of trying to be intelligible, there is the added frustration of having any comment which is understood, effectively disregarded. I try not to be too judgemental as I'm aware that if the roles were reversed I might be guilty of similar behaviour.

Nontheless I'm getting very intollerant to it and short of being rude dont know how to avoid it. Apart from being made to feel irrelevant, I find the patronising tone and gestures irritating. I was trying to point out to the wheelchair technician that he had left out a part when he was reassembling it and he just smiled and told me not to be concerned, everything was OK. He discovered half an hour later that it wasn't!

I was running a £3m company until 2 years ago designing IT solutions so I'm not used to being treated like an idiot and I'm finding it very hard to deal with now that I am.

When your brain is about the only thing that still works properly you don't want it to be ignored

Friday, 6 November 2009


A week later they were still eating the sweets. Testiment to the sheer quantities they amassed as opposed to our rationing abilities!