"I can't imagine what it is like..... "

There are times when I wish other people could "experience" MND for a day. It isn't out of any sadistic tendencies but just to give people an insight of what's involved. I appreciate that many of the illness' effects are blatently apparent but there are so many sub-issues too numerous to list that would become apparent if you lived MND for a day or two.


I have sometimes, during the many thinking hours available to me, considered ways to recreate an MND environment for someone. Unfortunately most are impractical or wouldn't really mimic the real thing. For example, wearing a hat weighing 10kg to cause your head to flop around under any lateral forces. Tieing 15 kg weights to your forearm to create the necessary difficulty when trying to scratch your nose. Obviously plonking oneself in a wheelchair would emulate much of what I have to contend with, as long as you weren't tempted to nip out occasionally Little Britain style, but most people don't have wheelchairs to hand so again this isn't going to work.

Stuffing scrunched up paper in your mouth would probably give you a similar challenge in terms of communication skills but you could probably only tolerate that for a few minutes. So my MND Experience Kit has not got very far and certainly isn't ready to go on Dragon's Den yet.

However, not being one to give up on something, I thought of a way for somebody to experience one and probably the singularly most infuriating facet of this disease, but it will only work for those of you with young children.


Apart from not being able to participate physically with the boys, having severly limited communication with them has become one of the worst aspects of having MND. Obviously in terms of their day to day care, Tracy has to do the vast majority of it. But there are still occasions when Tracy isn't around and I need to intervene in something they should be doing, but aren't, or vice versa. Also, as I have discussed in previous posts, you don't normally have more than an hour passing without some argument erupting. But more importantly than these negative communications, it is the inability to interject in other conversations with them. If I know they are returning from an activity I can prepare some comments about whether they enjoyed it etc. But I can't respond to their answer because they will be kicking a football in the garden by the time I am typing my second word.

All those little snippets of information during the day that kids pick up through afirmation or correction of what they say is largely absent. Jake in particular, through the course of a day can authoritively announce 100 "facts", the vast majority of which he makes up. The other day when we were in the car Jake authoritively announced that Ferrari and Lamborghini were in fact the same car made by the same company but just had different badges. Now I know that it wouldn't be the end of the world if he goes through life not knowing that Ferrari are owned by Fiat and that Audi own Lamborghini, but any self respecting bloke should do and it is my job to ensure he does!


Now obviously I could try and remember all the things I want to say, type them all out later before sitting them down for a daily lecture but by then I will instead be frantically spelling out "guinea pigs can't swim" as they dangle them over the pond.


So to go back to the original point of this post and for the benefit of the many people who have said that they can't imagine what it is like, here is something you can try that will give you some insight.

When your children are around try this. Designate a two hour period where you only communicate by writing notes to them. You must write in capital letters to achieve a similar writing speed. You can nod or shake your head for yes and no responses, but no pointing at things for assistance and no reverting to speaking when things get a little chaotic. Obviously no physical intervention and for maximum effect try it around bathtime or mealtime. I don't really expect anyone to try this but if you do let me know how you get on!
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And another thing

I know many of you who read this blog have donated to Chris' half marathon fund raiser, so I would like to thank you myself for your generosity. I would also like to say thanks again to Chris for doing it and having watched The Great North Run at the weekend, wish him all the best for a sub one hour time!!
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Chris' Run for MNDA

Its less than a month to go until Chris' run for MNDA. If you you would like to sponsor him, please visit

 http://www.justgiving.com/20billionmicronrun

He has been training hard for the half marathon and would welcome any donations

Bill Gates, if you read this, how about a dollar a micron; I could be flogging your software again by Christmas. You have always said you would leave your fortune to charity!

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The Boys First Gig

On Friday we took the boys to their first gig, Muse at Wembley Stadium. Tracy's brother Jeremy joined us as well. As you probably know, if only from reading the blog, we are big Muse fans not least because we have been into them almost since they started. The boys have grown up listening to them and they are the most popular selection on their Ipods. When Muse announced the Wembley dates shortly after the O2 gig in November, Tracy thought it would be great to take the boys along and booked tickets (no mean feat considering that 84000 tickets sold out in 30 minutes). Like any event booked almost a year in advance, I don't think about it until a few weeks before and this one had come around quickly.

The boys were probably as excited to be going to Wembley as they were about seeing the show! We got there early to avoid Hanger Lane in the rush hour and so we could see the three support bands White Rabbits, Big Pink and Lily Allen. We saw Big Pink at the O2 and we have nearly seen Lily Allen twice supporting other bands but have arrived late. She is actually pretty good live and the boys liked her. I suspect that their enthusiasm for her was largely the result of her singing the not-suprisingly-ever-released-as-a-single track, F**k You. If you haven't heard it, it is a cheerful dittie with the title featuring repeatedly in every chorus. I had feared it would be on the set list and had been thinking of distramction tactics, but there was no escaping it and by the second chorus they were joining in with great delight!

So as the light faded and the Wembley arch was illuminated we looked forward to the headliners. Up to now Jake and Luke had been messing around as normal whereas Daniel had watched all of the bands and he was now standing in front of me as the lights went down and air raid sirens filled the stadium. Our excellent view from the wheelchair platform meant we could see the 20000 people standing below us punching the air in unison. The look on Daniel's face was priceless and as Muse launched into the opening track and the stadium was filled with lighting effects, he could barely contain himself. I feel quite emotional again just thinking about it! He certainly didn't need any encouragement to applaud at the end. Jake and Luke had also got into it and had danced (in the way you can imagine two excitable 9 year old boys would) throughout.

The show continued in the band's inimitable style, one anthem after another, and performances second to none. In so many ways they shouldn't have reached this level of popularity. What they do is the fusion of ProgRock compositions combined with GlamRock performance. Neither genre is credible in 2010 but it works and 83999 others seem to agree. Even when they reveal something that would have got Spinal Tap asking "is this a f**king joke? " they get away with it. The spectacle in question is a 40 foot wide, helium filled, silver flying saucer which emerges from over the top of the 100 foot high stage. As it floated high above the audience, a silver suited trapeze artist drops down from inside and commences an aerial performance before it floats back out of sight. Fortunately for him nobody got their feet and inches mixed up!

They played for almost 2 hours and the boys enjoyed every minute. It was fantastic to be able to take the boys to their first gig. The only problem is that their expectations for future gigs has been set rather high!
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New Photos

For anyone interested, there are some more photos on the link under PHOTOS on the left or here http://picasaweb.google.com/tuscanboyuk/Facebook02#

Irony

Well this is amusing. Having been ranting about people talking to me like I am an idiot, I now have to make an exception; Anglian double glazing reps. Or at least the one who pitched up just now. Tracy was out so the boys must have let him in. As he emerged through the (non Anglian) patio doors into the garden he was confronted with me drooling over my cup of tea. Unphased, he proceeded to launch into his pitch for their panoramic range of windows. I thought after my grunts and head shaking he would, as most people do, conclude that he should talk to my wife instead and for the first time ever that was exactly what I wanted. But no, he continued as if I was completely 'normal'. Eventually after some more head shaking specifically in the direction of our brand new extension patio doors, he realised that there was no business to be had and politely, without even a whif of patronising said thanks and goodbye. And that Ms Morisette, really is ironic!
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