Sunday, 19 December 2010

Christmas time, Missed-a-show and whine

The last week has been tough for everyone. The inevitable pre christmas excitement for the boys makes for an even noisier house than normal. Then last week Daniel came down with a nasty chest infection and tonsillitis resulting in a 3 hour visit to A&E on Friday. He isn't dealing with it very well and not doing much to change the stereotype of the our genders' ability to tolerate being ill. He is also fed up with missing out on playing in the snow and missing the end of term events at school. It is taking its toll on Tracy who hasn't slept much in several days and also pulled a muscle in her leg. It is very frustrating to neither be able to help Tracy or comfort Daniel; the latter being both physically impossible and inadvisable due to contagience risk. The snow, while beautiful has added to the stress with the extra wet clothes and mess in the house. Snow and Daniel's illness prevented us going to the London International Horse Show last night, and Tracy has had to miss tonight's girls' Christmas drinks night. On top of all the normal stresses of Christmas it can be almost overwhelming. I wish I could do something to help. Hopefully by next weekend things will have improved and everyone else will have avoided getting sick and we can enjoy Christmas and Boxing Days with our families. I'm sure we aren't alone but hope that you are faring better!

Thursday, 16 December 2010

They don't write songs like this anymore...

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I have just been indulging in some Pink Floyd, they don't write lyrics like these from "SHEEP" anymore!

The Lord is my shepherd, I shall not want
He makes me down to die
Through pastures green He leadeth me the silent waters by.
With bright knives He releaseth my soul.
He maketh me to hang on hooks in high places.
He converteth me to lamb cutlets,
For lo, He hath great power, and great hunger.
When cometh the day we lowly ones,
Through quiet reflection, and great dedication
Master the art of Karate,
Lo, we shall rise up,
And then we'll make the bugger's eyes water.




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Monday, 13 December 2010

MND 1 Steve 0

Apart from my birthday, when I received the drawing of the boys I have managed to prevent an emotional meltdown for several months, which is quite a long period for me.


An aspect of MND that many people aren't aware of is something called emotional lability. It causes accentuated or inappropriate emotional responses. So it can make you smile or laugh at things which you shouldn't or break down into a sobbing mess over something sad or poignant. The smiling and laughing aspect is akin to getting the giggles. You know you that you shouldn't, but you just can't wipe the smirk of your face. The biggest issue of this for me is when dealing with the boys, as in situations where I am trying to discipline them, it is nearly impossible because I can't stop finding what they are doing, funny. Or if one of them hurts another by hitting them and causes them to cry, my inappropriate laughing sends completely the wrong message to the perpetrator, appearing to condone their actions, while upsetting the other one who is looking for some sympathy. It is this inability to show compassion in this situation which I hate and is potentially the more behaviorally damaging for the boys. Obviously I have tried to explain to them why it happens but it doesn't really help.

The flip side is a less common problem and generally confined to private scenarios in the presence of people who understand. Although there was one occasion around two years ago when I ended up crying uncontrollably in the middle of a Manic Street Preachers concert. They were singing A Design For Life, which apart from being one of my favourite songs and quite emotionally charged anyway, has additional emotional relevance as it was (along with the rest of that album) the soundtrack to early holidays in Wales which were spent walking through beautiful countryside and enjoying pub lunches. So hearing it just reminds me of what we have lost and will never do again, and combined with emotional instability the consequences are inevitable.

But today I had another lapse. I have hardly been out in 3 weeks, so with the outside temperature at a dizzy high of 6 degrees I had hoped to get out for a walk with Tracy and the dogs. I think I have mentioned the increased effort, both mentally and physically, required to get out now. This morning I had wrestled with whether I could manage the outdoor wheelchair and not just end up shivering and shaking with rigid legs and unable to move the joystick. Having convinced myself that I was going to do it, I got my carer to transfer me.


The first problem was a combination of the cold back room and the trepidation of the task, causing my legs to shake. This makes it impossible to push myself up into a sitting position from the the slouched position the hoist deposits me in. To make it harder still, the chiropodist visited last week to cut my toenails. And in order to maximise the time between visits, she cut them very short - far too short and exposed the nailbed. Consequently, anything touching the end of my big toe feels like needles being pushed underneath the nail. As well as preventing me pushing up in the chair it has made being hoisted painful and turning in bed has gone from being incredibly difficult to impossible.

Next, my peg feeding tube has become infected so any abdominal muscle contraction produces a spasm of pain.

The final straw was discovering that moving the joystick right or straight ahead wasn't possible and that I just couldn't muster any more determination to fight everything. Going out is meant to be enjoyable but I knew that today it had been about proving I could do it and defeating the barriers. But I couldn't, and it was that fact which pushed me over the edge. MND won today and I am a terrible loser. It better be ready for the re-match


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Tuesday, 7 December 2010

Has Stephen Hawking done more harm than good for MND awareness?

When I was young and first learned of Stephen Hawking, I remember thinking, "Christ, that has got to be the worst thing that could possibly happen; thank god I don't have it, poor bastard "

Now I realise how lucky, by MND standards, he is. Not just because it hasn't killed him but because he has been blessed with a mind of genius capability. As a result, his main passion in life has not been taken from him and he has been able to achieve greatness despite MND .

I don't have a problem with this and what he has achieved is truly remarkable and should be admired by everyone.


HOWEVER, as probably the world's most prominent MND sufferer he does not represent or portray the typical experience of an MND  patient. As a result many people's perception of MND , whilst grim is not anywhere near as grim as it really is.

To my knowledge Hawking has not done any significant publicity about the illness and has reached celebrity status on the grounds of his immense intellect juxtaposed with a completely functionless body.

Stephen Hawking is often referred to or impersonated in a comic capacity in films or TV sketches and whilst they are often funny (The impressions by Steve Coogan and Rob Brydon in The Trip were hilarious), it just illustrates how misinformed people are. It would be inconceivable to make comic references to someone with terminal cancer.


He is completely at liberty to choose whether or not to promote accurate MND awareness, but choosing not to results in the continuing default perception of the disease being inaccurate.
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Saturday, 4 December 2010

'tis the season to be pissed off with TV advertising

Pre Christmas TV is a bit of a nightmare. So many programmes involving cooking and every other advert is for mouth watering food, none of which I will be eating.

I have pretty much given up eating and drinking. Even the latte I enjoyed each morning usually makes me cough as it goes down the wrong way. Not only is it fairly unpleasant but I am also very aware that aspiration is the most common cause of chest infection and pneumonia. So it really isn't worth the risk. This will be the first year I won't be able to eat Christmas dinner. I didn't anticipate how much I would miss eating and drinking. The emphasis by health professionals on the nutritional requirements being satisfied through PEG tube feeding fails to prepare you for missing the tastes and social aspects of food and drink. Obviously there is nothing to stop me being involved at meals but watching everybody else tucking in isn't much fun.
A good pint of beer, bacon sandwiches, crispy duck and chicken jalfrazi are all history along with everything else. I really miss them, and being reminded of them all evening on TV doesn't help.

Its not the the only thing getting me down. This cold weather is almost totally confining me to the house. The effort and logistics required to get out is limiting it to planned excursions. Spontaneous outings either by myself or for example, to the park with the boys, have ceased. And by the time warmer weather returns, wheelchair control might not be possible.

On a more positive note, we have just brought last year's live christmas tree in from the garden for its second christmas, so barring some freak accident involving falling off the toilet, it looks like I will share the christmas tree's good fortune.
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Friday, 3 December 2010

Tow in the Snow

Yesterday I managed to get out to play with the boys in the snow. My toboggan towing service seemed to be enjoyed by everyone. Blog followers will know that I was out in the snow during the last snow in February. It was nice to be able to do it again although it was noticeably harder. The roundabout proved useful allowing for my inability to drive the wheelchair in a straight line at the moment.





Monday, 29 November 2010

MND research update

I wanted to let everyone know that last week we had news that a trust fund that provides donations to charitable causes have agreed to provide the full £100k for this research. We are hoping that following the completion of skin biopsies the research can start in the new year. Thanks to everyone for taking an interest in this, for those of you who wanted to make contributions, I will keep you up to date in case further funding is needed to which these donations can applied.

Friday, 26 November 2010

Birthday Break

I mentioned in the last post that Tracy arranged a night away at Limewood at Lyndhurst in the New Forest. Well that is where I am while writing this. It is probably the best hotel we have ever stayed in. Jamie Cullum got married here apparently and the car park had predominantly Aston Martins, Porsches and Range Rovers in. My Mercedes SLK AMG 55



 would have been right at home. Unfortunately the VW Caravelle van I traded it in for,


 looked rather more conspicuous. I am surprised that the doorman who offered to park it didn't stick it in the staff car park.

The hotel is stunning. An old manor house set in the moorlands of the New Forest in Lyndhurst. The first hotel I have been to where the rooms look like the brochure photos. There are numerous cosy lounges and a central indoor terrace. There is also a spa within the grounds. We have had a relaxed afternoon. We managed a walk around the grounds and out on to heathlands. We didn't get very far before the combination of rough ground and an icy arctic breeze persuaded us to return. We had thought earlier about visiting the nearby beaulieu motor museum but it was getting a bit late and having paid to be in a swanky hotel we thought we should get our money's worth.

So we spent the rest of the afternoon doing very little helped by the free wireless internet access!

I can't pretend it isn't incredibly frustrating having to be fed through a tube when there is such fantastic food available. Tracy was happy to keep eating fairly low key in one of the lounges which helped and I managed a few mouthfuls of risotto.

If you are looking for somewhere a bit special, Limewood is worth a look.

 


 

Monday, 22 November 2010

This never fails to make me smile

This is a better version of the previous video, look at Luke's expressions!

November in a Nutshell

Tracy has just told me that instead of doing the usual Round Robin inside the Christmas cards this year, she would simply include a link to my blog, so I thought that I better update it pronto. So for those of you good people who keep up to date with it, your work is done! For the rest of you, get reading.

I am still here. Lack of entries down to several factors, not least the 'homework' syndrome; if you put off doing it, the volume increases at an inversely proportionate rate to your enthusiasm level to complete it. My latter exam results at school illustrate that I am no stranger to the problem.


The other phenomenon which I am experiencing is the less I do the less I fit into the day. To explain further, it can be 4pm and I still haven't done something fairly simple planned for that day (more often than not it includes updating the blog). When I was working I could have seen 3 prospective clients in Central London, Surrey and Hampshire, spoken to 20 other companies on the phone and resolved a handful of crises in the same time frame. If I spoke to my mum in the evening it would sound like her day had been equally busy despite it comprising of a trip to the local Budgens and a high pressure meeting about the weather with Joyce down the road, over coffee!

And now it all makes sense. (mum if you are reading this, sorry)

So, instead of trying to catch up with the blog backlog by writing ten full length entries, you will have to make do with this compressed summary and hope you aren't as unimpressed as Mr Perry, my English teacher was in 1983!

At the beginning of November I took the boys to The Top Gear Live show at Earls Court. I remember writing last year that I was going to go to this year even if I had to take breathing apparatus along. Fortunately this wasn't required but I will make the same promise for next year. My mate Stuart bravely agreed to accompany us and despite suffering a nasty gash to his head en route, the result of an argument with some shelving in a petrol station shop, he did a sterling job of keeping control of the boys. The show was the usual mix of stunt driving and immature antics that you would expect from messers Clarkson, Hammond and May but you can't fail to entertain 9 year old boys by driving a car at high speed around a small arena, especially when the car is engulfed in flames.

The following week we took the boys to see The Railway Children production at Waterloo. They are using the old Eurostar terminal, with the audience sat on opposite platforms overlooking a sliding stage on the track. We had hoped that the boys would enjoy it, especially as a real steam train is used, but it simply couldn't compete with the possibility of seeing Stig get cremated!

Jumping forward to this weekend, we took the boys to Wimbledon theatre to see Cirque de Glace. Billed as a Cirque de Soleil on ice, we were all a bit disappointed. The ice skating was impressive, considering the size of the stage but it all got rather repetative and the production's  premise - the history of the earth,  was rather pompous. Mercifully it was an abridged history, particularly between the end of the first act which depicted the iron age and the start of the second act which dealt with the moon landing. But we didn't complain; if they had covered the first 3,999,999,960 years in 60 minutes, they were hopefully going to knock out the remaining 40 in a few seconds! They managed to stretch it out to 30 minutes, during which we had also got a better view, courtesy of the 20 people in the next 2 rows who decided at the break that Wimbledon must have something better to offer. The boys would have joined them given the choice.

Other events during November included my birthday. Quite frankly I would have let it pass ignored, but I know others including the boys like doing something, so we did. We had some friends over on Saturday and Tracy has booked a night away in a New Forest hotel this Thursday which will be nice although I am sure we both have worries on the logistics of it. I also received a beautiful drawing by Tracy of the boys and me.



I had a nice day on Friday with Adam at Duxford Air Museum near Cambridge. Bit of a treck, particularly on the way back through Friday evening traffic. The sat nav decided it knew a better route than the A1M and M25 so if you live anywhere within the M25 we probably drove past your house... Possibly twice. The museum is great (assuming that you like aeroplanes) and there are some brilliant exhibits including Blackbird, B52, Vulcan (I can almost see your eyes glazing over so I will move on ). Adam will never forgive me if I fail to mention that the 'impressive' growth under his nose is purely for charity and will be gone first thing on December 1st. I know he is very self conscious about it so as we wandered around the US Airforce hangar, I told him he needn't worry as everyone would just assume that he was American.... A gay American obviously!

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Monday, 8 November 2010

Help fund exciting MND research

Another MND sufferer and myself have been discussing an exciting research opportunity with a leading MND specialist at Kings College Hospital. It is based on a 3 year study to try and discover a drug which can remove a protein which is believed to be the cause of motor neurone damage in 90 percent of MND cases. The research will use stem cell techniques to develop motor neurone cells from skin cells of 5 MND sufferers, including me and develop a drug which can successfully remove the protein. It is widely believed that the nature of motor neurones and the a prevailing toxic environment means that stem cell implanting is not an effective procedure, but using stem cells in the manner proposed could dramatically accelerate the discovery of an effective treatment.

However, this research needs up front funding for the 3 year period totalling £100,000. The other MND sufferer has already agreed to put £20,000 of personal funds in and I am prepared to contribute between £5000 and £10,000. So we need to raise at least £75k,. We have approached the MNDA and whilst they would in principle be prepared to contribute, they would not do so until the end of 2011. We all know that medical research is a slow process and we know that any success may not be soon enough for us, but the sooner we start the better and Kings could start as soon as 12 weeks after securing funding.

So to get to the point, we need funding. I am not looking for anyone to contribute personally because you have already generously donated on at least one occasion. What I would like you do is forward this email to any organisation who you think could make a contribution to the charity trust which will fund the research.


I appreciate that in the current climate, funds are tight and some of you with your own businesses know that any expenditure has to be carefully considered, but I hope that the possibility of being directly involved in curing this horrific disease will help organisations decide to contribute whatever they can.


For anyone who would like to have more details of the research before committing to making a donation, I am happy to provide documents from Professor Chris Shaw.

If you can help please email me on this address steveevans@embergardens.co.uk
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Thursday, 28 October 2010

Getting out

I am not looking forward to the colder months ahead. Getting out has already become more difficult. Firstly the process of transferring between indoor and outside wheelchair is more involved with the need to transfer feeding system between the two. It doesn't take that long, but its another thing and if the carer isn't here it has to be fitted in with everything else that is going on. Then there is the increasing physical limitations. I am no longer able to bomb around at a breakneck 7.5 MPH because I can't push the joystick forward far enough and because the bumping around causes me to slip out of the seat. The cold weather makes this worse as it causes my legs and core to go rigid and I end up almost lying down.

But the biggest deterrent is the fear of the dreaded puncture. I have to admit that going out by myself is at best, foolish and at worst, completely irresponsible. I don't take my eyegaze system out usually because it is difficult to see where I am going with it on and it wouldn't survive a shower of rain. So if I have any problems I have no way of communicating. I have stuck a card on the armrest pointing people to a larger sheet kept in the bag on which I have printed my 'instruction manual'. It includes various contact numbers including a wheelchair recovery service and details about changing wheels amongst other information. However, it relies not only on whoever is helping having some common sense to decide the best course of action but also them being able to give up at least an hour of their time. And knowing this means I constantly worry about the need for assistance and feel guilty that someone is going to have their day considerably inconvenienced if I do.

When I do go out I spend most of the time carefully scouring the ground in front of me for potential puncture inducing debris. Items on this list are numerous and include screws, nails, broken glass, thorny brambles, drawing pins, various metal items which have fallen off bikes and cars. Once spotted, I try and commit the location to memory for the return trip. It is probably verging on paranoia, but the fear of being stranded without being able to communicate is now significant and is either deterring me from going out or spoils the experience when I do.
 

I have until now forced myself to get out at least once a week just to know that I can still manage it. If a longer period elapses between outings I fear that just a small step change in my strength or range of movement will prevent me from using the outdoor wheelchair . I have already lost the ability to turn right, so I have to spin anticlockwise 270 degrees instead which confuses everyone, and the next person who says "ooooh,  showoff" might regret it! I am hoping to get the controller modified to make right hand movement more sensitive, but it might not help.  So with the winter months approaching this maybe the last time I will be able to get out by myself. And that fact is hard to deal with.

Monday, 25 October 2010

Diggerland

Yesterday we took the boys to Diggerland. We have been recommended it by a few people and it didn't disappoint. As the name suggests it is a theme park based on diggers. I am not talking about the miniature diggers you stick a quid into and move some play sand around, but full size 6 tonne JCBs.

The 'rides' include static JCBs that the kids can dig enormous holes with, JCB trucks they can drive around a muddy quagmire, a ride involving sitting in a giant digger bucket on a giant JCB and being swung round at high speed, 10 metres up in the air, and the boys favourite, driving a Nissan 4x4 offroad.






A number of factors made Diggerland a refreshing change from other theme parks. It isn't too big, most rides are available to kids over 5 and can be ridden without adult supervision. I suspect that being late October helped, but the best thing was having no queues beyond a few minutes for anything. Despite not arriving until 12-30 the boys did everything at least once and we left by 4! So unlike Legoland we haven't needed 48 hours to recover. OK, legoland is on an entirely different scale, but I think the boys possibly enjoyed Diggerland more.


We took the video of Luke in one of the smaller diggers because his facial expressions as he concentrated were priceless, although the iphone quality makes it difficult to see. I don't find Mr Bean very funny, but Luke pulling the same facial contortions completely naturally is hysterically funny.

Thursday, 21 October 2010

Offline

Last Sunday some ??!?!?? !?!??! stole the communication cabling out of the road nearby. It happened before about a year ago and like last time it will take 4 days to replace it. So for the sake of a couple of hundred pounds worth of copper, several hundred homes and businesses have been severely inconvenienced. Services such as alarm monitoring services and personal care alarms have been rendered useless. Obviously they will never catch the thieves but even if they did, what would the punishment be; few hundred quid fine, a bit of community service.


From a personal perspective, it is particularly infuriating as internet access is my main method of communication and as importantly a means of keeping occupied, without which I am left watching TV or sitting in the garden watching the water level in our new pond, descend (more on that another time ). The other activity still possible is blog writing, although nothing can obviously be published yet.


So the situation has coerced me into shuffling my backside and writing something. So this might be the first of a deluge of entries or not depending on how addictive Cash In The Attic proves to be. Until now, and despite subscribing to almost every Sky channel, I have avoided watching TV all day long. I admit to watching Heir Hunters (terrible) and Homes Under the Hammer as it simply is preferable to listening to the electric toothbrush, shaver or the silence of my rather uncommunicative carer while she operates them. But I try and avoid watching TV after 11. I have countless DVD box sets to watch but decided a couple of years back to save them until there is nothing else I can do. And that time hasn't arrived quite yet.

Weather permitting I would rather sit in the garden or better still, go out. I don't put the computer on the outdoor wheelchair but when the broadband is working, if I decide to sit in the garden I can keep busy with all the stuff most people do in their office while they should be working.

But for the next four days its Daytime TV or this

I have decided that once we are reconnected I am going to research the extent of this type of theft and start a campaign to get telecom companies to put better protection in place.
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Thursday, 14 October 2010

I am...

very aware that a blog update is long overdue and this entry doesn't go very far to redress that. Finding it difficult to muster sufficient enthusiasm to write much at the moment despite having copious amounts of time to do so. Hopefully have something soon
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Tuesday, 28 September 2010

"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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Monday, 20 September 2010

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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Friday, 17 September 2010

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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Tuesday, 14 September 2010

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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Sunday, 5 September 2010

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#

Thursday, 2 September 2010

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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Tuesday, 31 August 2010

Thursday

The final day of our holiday. The boys seem keen to stay around the farm so Lauren and Alisha have kindly offered to look after them while everyone else goes out for the afternoon. We have decided to visit Abbotsbury to see the sub tropical gardens. On the way we drop into a wood sculpture shop. An hour later and with the shop owner considerably richer thanks to several undercover birthday present purchases, we move on to the gardens.





After Tracy's obligatory visit to the plant shop we make our way back to rescue the girls. They have managed to keep them entertained with various activities including an obstacle course race in the field.



The boys have been on all week about having a camp fire so in the evening David organises wood collection and with the fire going, and several packets of marshmallows ready for toasting, the boys are very happy.

We have planned to stay up late tonight as there is meant to be a meteor shower, and with no light pollution and clear skies we should get a good view. So from midnight until 1am everyone is lying on their backs in the garden under duvets waiting for the next streak of light across the sky. It probably didn't live up to what most of us had expected but we saw around 20 before calling it a night.



So that's it, the end of our Dorset holiday. Everybody had a good time, the cottage was excellent and the weather was pretty good. We have already booked for next year so along with the cruise in May, 2011 is sorted holiday wise. Fingers crossed.

Thursday, 19 August 2010

Wednesday

The sun is shining again so the beach is today's destination. The boys are keen to do some fossil hunting, so the first destination is Charmouth . A quick visit to the pick axe hire shop and everyone emerges ready to start smashing rock. Again, the wheelchair unfriendly terrain forces me to view from a distance but I can see everyone is getting stuck in. I can't help feeling that Jake will feel more than a little disappointed when he doesn't return with an entire T-Rex skeleton


After a couple of hours of bashing the dorset coastline everyone returns up for a well earned lunch. Predictably one of the boys has lost their mini pick axe so the shop will be delighted with retaining their £12 deposit on a hammer worth five quid! There was some success in finding some fossils although I didn't see them at the time and they were subsequently lost by the the time we got back.


After lunch the non-wheeled contingent took the dogs for a walk up the coastal cifftop path for an hour or so after which, despite already being 4pm, we drove another few miles to Lyme Regis. The thinking being that if nothing else we could check out wheelchair access and return tomorrow if it was good. Sue and David, having been before knew about ignoring the first signed beach car park from which there is a long descent to the sea.


This was more like it; a sandy beach, not too steep a gradient, perfect for the wheelchair. The late afternoon sunshine was still warm and cast the bay in a wonderful warm glow. We claimed our spot while the boys headed into the sea. The rest of the afternoon was perfect, the only regret being that we hadn't been here earlier.


For the next couple of hours the boys pursued their normal beach activities. Jake divided his time between searching for rotting sea creatures and infiltrating other family groups with children who look like they would benefit from his sandcastle construction expertise. If we ever loose sight of Jake on a beach, we just look for someone sitting near the waters edge, surrounded by children doing all the work under their instruction. Nine times out of ten our search will be over.

Daniel will have commandeered a suitable person to tow his rubber ring around while he relaxes on it, and Luke will be dancing hilariously in the breaking waves or sitting in someone elses chair, huddled in a blanket telling us what a stupid idea it was to come to a beach on such a cold day.



Today, Alisha is the lucky person tasked with towing Daniel and everybody's chairs are safe as Luke does his mad moroccan water dance, the land based version can be seen here

http://www.youtube.com/watch?v=vivYe85QVZo

Lauren manages a few minutes paddling before deciding that Alisha has cousin entertainment duties in hand. She promptly returns to her Blackberry !

By 7 o'clock the sun is starting to set, the distance cliff faces glowing in the evening sun makes a perfect backdrop for the holiday's official group photo before heading back. It has been a lovely afternoon and I am sad it is over. It is one of those moments I find quite emotional. The combination of the beauty of the place and spending time with all of my family contrasted by the knowledge that I may not do this again has inevitable results!


By the time we get back it is getting dark and while Tracy sorts out the boys, the owner David invites me to look round the barn with his project cars. They include a fantastic Daimler Dart convertible and a 3.8 litre 1960s saloon. The barn could accommodate many more and if it were mine I could easily fill it.
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Wednesday, 18 August 2010

Tuesday

The rain forecast for yesterday has arrived today. No hurry to go out but we eventually decide to head into Weymouth to find an indoor activity. Still raining when we arrive so we go to cinema to watch Cats And Dogs. If you like films where animals are able to talk with computer modified mouth movements, you will love it. I don't, so didn't! Lauren, having recently turned 17 managed to escape and spent a couple of hours shopping and I am sure given the choice Alisha would have joined her. She wasn't, so couldn't!

The weather doesn't improve and as had happened on our arrival we are driving through low cloud on the way back. With visibility down to 25 yards, it is an interesting drive back. But the weather changes quickly around here and by 7 the sun is out and I am sitting in the garden looking across the valley to the neighbouring farm land.


The cottage owners, David and Sarah had wanted to get some feedback about the place, so later they came over with enough wine, beer and cider for a small party and we had a very pleasant evening with them.

The boys have spent the evening in the other room with the girls playing Sims on Lauren's laptop. Daniel has become rather addicted to it over the last few days. He gives us updates of life in the world he has created. His Sim family is based on us complete with dogs, well, dog (Daniel reported the demise of Bodie in a recent house fire as the result of insuficient smoke alarms; who says computer games have no educational value ) Of course in Sims world Bodie Mk1 is forgotten in seconds as a few clicks later Bodie Mk2 appears!


I am glad the boys had something to keep them busy. When David and Sarah arrived, Luke was shooting Dot Cotton on the TV with his suction cupped bullets and Jake was using the same to kill flies on the wall. We await the redecorating bill.

At the end of the evening, with the boys occupied, David offered to take Tracy, Sue and David out on the Landrover for some midnight wildlife spotting. The badgers that they saw probably wouldn't have hung around with a deluge of suction cupped bullets raining down on them!

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Tuesday, 17 August 2010

Monday

Having been promised wet weather today I have suggested going to Bovington Tank Museum, and it is fair to say that it is not a universally well received idea but having visited the area 4 or 5 times and not gone I ignore the groans and convince them to go.

We arrive in time for the daily outside display of various tracked vehicles including the 60 tonne Chiefton tank. It only lasts 30 minutes and seems to have be enjoyed by even the earlier dissenters! Afterwards the boys, Alisha, lauren and David get a high speed ride around the display arena in the tracked armoured supplies truck. Daniel returns beaming and claiming it to be the best ride ever.


We spend a couple of hours looking around the museum which must have over a hundred tanks. But even I have to agree there are only so many you want to look at in a day. Daniel's ability to smell a gift shop at a hundred yards has not deserted him and the boys emerge as pint sized soldiers complete with flack jackets, hats and guns.


The journey back is whiled away with the the boys firing the suction cupped bullets across the car against the opposing window.

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Monday, 16 August 2010

Saturday and Sunday

Saturday

The boys have been promised a trailer ride around the farm by David, the owner of the cottage and farm. So while I am getting up (one of my regular carers has joined us) everyone gets an informative tour. Later I joined them for a picnic lunch in one of the fields. we have decided not to go further afield today as the weather isn't great.

Sunday

The weather looks good so we're off to the coast. We start off with West Bexington but like many Dorset beaches there are only pebbles and these are sufficiently deep to not be able to drive my wheelchair on, so we have to settle for a spot next to the car park. The boys are happy enough, they have gone off to pester some of the fishermen lined up along the shore. Every now and again each return with various pieces of fish in their buckets. Jake is particularly impressed with his fish head which is presented to me like a glove with his fingers protruding from each eye socket. Having now befriended one of the fishermen who has let them have a go at holding the fishing rod, the boys now return with complete fish. Within minutes Jake is wearing most of it and is showing the spine to anyone who is interested as well as many people who demonstrably aren't

After everyone had regained their appetite sufficiently to stomach the now rather unfortunate choice of tuna sandwiches, we decided to move on. Jake was instructed in no uncertain terms to leave his fish behind, although the empty bucket was fragrant enough to induce nausia within 2 minutes of leaving the car park.


Our next destination was West Bay, still pebbly beaches but a more picturesque location with a fishing harbour. I was able to get a bit further on the beach and we spent the rest of the afternoon and early evening there before getting fish and chips and returning back to the cottage.

on our return the boys jump out down the lane to do the daily feeding of the 2 old sheep in the paddock before racing us back to the cottage. It has been a nice day despite feeling a bit isolated initially at the first beach. Having now established a routine with the carer and in the knowledge that there are no issues with things like loo or bed , I am feeling much more relaxed.
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Sunday, 15 August 2010

10 Go Mad in Dorset

Wildlife of dorset be scared, jake is on his way. His long-term fascination with creepy crawlies shows no sign of ending and most specimins that aren't already dead when he finds them soon are shortly after.


After a long tradition of staying in our regular North Wales' holiday cottage we are instead going to a farm cottage in Dorset. Apart from the shorter journey it will be better suited for me. We are going with my mum, sister, brother in law and nieces Lauren and Alisha.


We arrived at our dorset holiday cottage on Friday after a rather slow journey down. Set in acres of farmland, the barn style cottage easily accommodates our party of 10. There are plenty of empty fields for the dogs to run around in and the cottage is well suited for me with a well thought out layout for wheelchair and hoist use.


Jake is looking forward to studying (killing and disecting) the local wildlife and within an hour he turns up proudly holding a dead bird which he found (already dead) in the adjoining barn. It is already Jake's "best holiday ever "

more to follow....
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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

http://www.qedonline.co.uk/catalog/product_info.php?cPath=86&products_id=609


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
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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

http://www.justgiving.co.uk/20billionmicronrun


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!


http://www.justgiving.co.uk/20billionmicronrun


cheers mate
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Sunday, 27 June 2010

Not feeling witty today

I have recently started using my feeding tube for supplemental nutrition. I have been struggling for a while with eating; many types of food have become difficult to eat and even the easier ones still take time and occasionally result in a choking incident. The effort required combined with poor appetite meant it was becoming difficult to get through the recommended calories every day. With my weight at 9 stones it was important not to lose any more and having gone to the trouble and through the considerable discomfort (courtesy of the incompetent NHS nurses) of having the feeding tube (PEG) done, it seemed daft to die of malnutrition.
Having now mentioned the issues having the procedure, I feel compelled to tell some home truths about "our wonderful nurses". I am sure that there are many nurses who are caring, empathic, competent and completely committed to their profession, but I wish the media and politicians would acknowledge the fact that there is significant proportion who are uncaring, impatient and unfit for the job; nurses who think that the debt of honour they are owed for undertaking such a worthy vocation, negates any need to demonstrate any of the qualities of a decent nurse. I won't go into specifics but the experiences of me getting the PEG, Tracys post caesarian care, the indifference and lack of interest in caring for my dad before he died, along with many similar instances I know friends have experienced, illustrates that the NHS problems are not just ones of funding and management.

So, getting back to the original topic, the tube which has been sticking out of my stomach for the last year is now connected every evening to another tube, which via a small pump is connected to 750 calories worth of.... well, grey liquid... yum. It does take a lot of the pressure off eating but it is yet another piece of equipment and marks another stage of deterioration.
A more scary development has been episodes of shortness of breath. I have been coinciding any eating that I can do with the carer visits and although I am not eating huge amounts I was getting short of breath afterwards. It is caused by the stomach expanding and giving a weakened diaphram less room to move. Despite being well aware of the steady decline in respiritory test figures, reaching a point where I may soon need ventilation equipment, even if only on an intermittant basis for now, is difficult to come to terms with. It leaves no doubt about what's going on and without wanting to be over dramatic I can't help looking at it as being the beginning of the end game. Up to this point I have always been able to cushion the impact of increasing physical disability with the comfort of knowing my breathing was not too badly affected, but that is no longer the case. It forces me to think about what degree of intervention I will want. Hopefully the pace of deterioration will remain relatively slow but it is difficult to find anything positive at the moment.

Tuesday, 22 June 2010

Jealous Guy

I have never really done jealous. I was always convinced that 99 percent of life is in ones own hands. A phrase that has never failed to irritate me when something goes wrong for someone is "that's just my luck ". I know it is said without any self psycho-analysis but I just can't help judging them and concluding they have fatalistic approach to life. For the record there is now another phrase which instills equal irritation, so please refrain from saying "life's too short" in my company!

I was certainly never jealous for materialist reasons. Not because there weren't loads of people with a great deal more in this respect, but because I could accept that if I wanted the same it was solely down to me to put sufficient effort in to achieve it. I chose to achieve to the degree that I did and was very happy with the effort / achievement balance and I didn't want to have more enough to put the extra effort in. You could accuse me of underachievment or even laziness and to a degree it is true, but I was content and never jealous.

Unfortunately the 1 percent which you can't control can put a spanner in the works and for me it has proven to be a fucking big spanner.


And a couple of otherwise fairly ordinary experiences at the weekend,  by virtue of occuring on Fathers day made me realise how jealousy felt .

To start with, there was a fairly typical altercation between Daniel and Jake. Usual sort of thing; initial small verbal provocation, hugely disproportionate verbal retaliation, physical counter attack, full scale scrap. And this time for good measure, a Nintendo DS being thrown out of car on to driveway. I appreciate that this sequence of events is straight out the 9 year old boys instruction manual, between the chapter titled How to Make Farting Noises Using Almost Any Part of Your Body and the one titled The Most Inappropriate Behaviour For Any Occasion, but the Daniel / Jake conflicts far outnumber those of both other sibling combinations put together.

So I am sitting in the back of the car unable to intervene either physically or verbally. I always attempt the latter but it is just an incomprensible string of noises and other than maybe make them aware that their behaviour has not gone unnoticed, it does nothing to defuse the situation. Even if I have had my communication device with me, it would have been completely ineffective, you simply can't generate the sentences quickly enough or include the necessary intonation.

So I just have to watch as two of my sons tear chunks out of each other and tease one another mercilessly until one or both of them burst into tears. A few minutes later after being unloaded from the car, they are still going, but despite being mobile I am still not able to intervene.

We had meant to have been coming home to open Fathers Day cards and presents but I wasn't in the mood any more, and as I was already in the outdoor wheelchair I decided to go out by myself for a while. To a small degree I was angry with the boys behaviour, to a greater degree I was depressed by the continued animosity between them and my complete inability to help reconcile their differences.

So with an hour or so before the carer would arrive, I took myself down to the Hampton Court to watch the world go by on the river and this was the second fairly commonplace event that had more significance on Fathers Day.

I find myself with a lot of thinking time but for the sake of psychological self preservation I have learned what not to think about. This includes what I used to do and enjoy, what I previously had thought I would be doing in the future, what it will be like as my condition worsens and what I would do for the first week if I was cured. But the first and foremost thought to avoid is what I would have been doing with the boys if I didn't have MND, that one is a killer.

Sometimes you just can't avoid it. When they play football in the garden or playing on the Wii. When everyone else is singing Happy Birthday to them or when their Uncle dangles them upside down by their feet. Otherwise I'm pretty good at obeying the rules.

But last Sunday sitting by the river I slipped up. It was impossible not to notice dads and sons cycling, fishing, rowing and playing football. And it was impossible not to be jealous.
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Friday, 11 June 2010

Being Ripped Off

I was looking for an infrared remote control with a single large button which I could control with my foot in bed. It would simply operate the power to my TV. turn it off when I ready to sleep, on again in the morning. I thought about standard £10 programable remote control with all buttons programmed with the power ir so any contact with my foot should turn tv on or off, and I may well resort to that.
Anyway to the point, after much internet searching the only product was from disabled product specialist, GEWA. And it costs over £500, and you don't even get the buttons. It is essentially a £10 programable remote with 6 wires soldered to the circuit board and presented as 3.5mm sockets on a plastic case.
http://www.qedonline.co.uk/catalog/product_info.php?cPath=86&products_id=609

sum costs of parts, £20 or less


This is just one example of this shameful exploitation of disabled people and it costs us, charities and local authorities millions.
Hopefully a friend who is handy with a soldering iron will make me the same thing with a programable remote control and 3 nudge buttons from a fruit machine spares supplier.

other examples are these buttons at over £50
http://www.qedonline.co.uk/catalog/product_info.php?cPath=78&products_id=218

and this was a great example. An over bed table at Argos £65
http://www.argos.co.uk/static/Product/partNumber/8640314/c_1/1%7Ccategory_root%7CHealth+and+personal+care%7C14418350/c_2/3%7C15701120%7CMobility+aids%7C14418351/c_3/4%7Ccat_14418351%7CMobility+and+home+help%7C14418354.htm

same table at specialist disabled supplier £235
http://www.betterlifehealthcare.com/view_product.php?prodID=659

Raising Awareness for MND

A friend of mine, Liam Dwyer who also has MND has arranged an awareness campaign involving motorcyclists riding round the M25 with High Viz vests with his campaign message.

If you are a biker or you know bikers who would like to get involved

visit http://www.disabled4disabled.co.uk/m25.html

We have to get many more people aware of this disease, so please get involved

Monday, 7 June 2010

Ambitious?

I have just installed remote control software on my eyegaze computer so I can control all the pcs in the house and continue to provide technical support to Tracy !

Sunday, 6 June 2010

Why don't governments provide more research funding

I was thinking about this recently. A common claim is there is insuficient financial incentive for drug companies to invest in MND research and this may be true. However, there is a significant incentive for governments to invest.

Without breaking it down the combination of disability benefits, unemployment benefits, carer costs, equipment and medical services costs, loss of income tax revenue the annual bill for me is at least £50k per annum. In the uk there are around 4000 sufferers. So based on a conservative estimate, that is £200 million per annum. In the States, based on the costs being similar, that equals £2 billion. So worldwide it might be £4 billion possibly


I appreciate that government health and social funding is dramatically different in the US so I would welcome any feedback on typical patient costs

I don't know how these figures compare with cancer care or MS or Parkinsons. Obviously we constitute a much smaller population and have relatively short duration of care but I suspect that proportionally it is an expensive illness. Now whilst financial investment is no guarantee of finding a cure, not investing IS a guaranteed way of never finding one. The example of cancer research demonstrates that progress is made when money is thrown in the right direction.



The prevelance of cancer at least creates massive public awareness and vast charitable funding which, although not resulting in a cure for all, has significantly improved the chance of survival. I don't believe MND awareness will ever reach the point that it will raise enough charitable funding to make an impact on the research required to find a cure and the past 20 years have proven that pharmaceutical companies aren't sufficiently motivated.



So if governments don't start changing their approach, billions will be spent every year for the foreseeable future. Even if this funding only resulted in finding a drug that halted progression, the extra cost burden created by ongoing care for current patients would be greatly offset by the longer term savings keeping future sufferers working and able.

Saturday, 5 June 2010

Sitting Duck

I am sitting in the garden and a spider has decided to make a web between my computer and my head and I can't move enough to persuade it to stop!




Yesterday evening I sat and watched as a mosquito feasted on my leg.
 
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Wednesday, 26 May 2010

Homework

These days when it comes to helping with the boys' homework I am pretty hopeless! It is a stressful enough event with a full complement of communication skills so when I tried to help with jakes maths homework the other week, Jake only just beat me to breaking down into floods of tears through sheer frustration!

However this week, I was able to offer a little more help. He had been asked to find a poem which dealt with a dilemma. They just trip off the tongue, don't they? No. And they certainly didn't off a 9 year old boy's. A boy who lives in a house of boys more interested in poo than Poe!

Just as I was about to delve into Google with various permutations of words including "child", "poetry" and "dilemma" I had a better idea.

So the next day Jake was packed off to school with a printout of what has to be the best example of poetry on the subject of dilemmas; Should I Stay or Should I Go by the celebrated poet, Strummer.

It was apparently received well!

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Thursday, 20 May 2010

Thanks....

.... to everyone who have left comments recently. I look out every day for email notifications of them being left so they are always read. Although I enjoy writing the blog, I probably wouldn't make the effort to write it if it wasn't being read and hopefully enjoyed by someone. If you are following it but tend not to comment, remember they can be left anonymously, so you can be as disparaging as you like with complete impunity! Keep them coming.

Wednesday, 19 May 2010

The reason for having wheelchair 3rd party insurance

So with the sun shining and my cold finally gone, I managed to get out on my other chair yesterday, what could go wrong. Well actually, nothing really. Apart from the usual choking session on an iced bun and suffering the patronising palace staff, it was a very pleasant day with my mum in the sunshine.

OK, sorry, have to elaborate on the guide in the palace who was called to help escort me to the lift. Having finished talking to the senior citizen in her wheelchair who was also seeking the lift, she approached me.

Now, maybe it was her overhearing my incomprensible slurrings to my mum, my slumped posture in my chair or the wonky smile I responded with after she said "OK Dear?" to me, but whichever it was, she decided to put to good use what she had been trained to say when dealing with a halfwit. After confirming that it was her expert opinion a lift would be required to get me to the 1st floor, she wanted to explain I would need to wait while she escorted the first wheelchair before escorting me. "It will be 5 (holding up open hand) minutes (pointing at watch ) before I can take you " she shouted, annunciating every syllable, thus covering the options of me being blind, deaf or simple. The fact that she felt the need to repeat the process... twice, suggested that she had concluded I fell into the latter category.

It was all wasted on me anyway (as I ignored her and simply followed on the (w)heels of the other wheelchair) because knowing where the lift was, it would save 5 minutes by simply waiting at the lift and not a 5 minute walk away. When you have a terminal illness every minute counts. And, more importantly I wanted her to know that not only was I not simple, I was smarter than her. Petty? Maybe, but when your only fully working faculty is overlooked, you feel the need to put it in the spotlight.

By the time we had reached the lift, my cunning plan had been spotted, but I was only rewarded with "OK You wait here, I will be back down for you in a minute, DON'T WORRY " Instead of ramming 250kg of wheelchair into her frigging legs, I did my crooked smile and made my "OK" noise. However, after subsequently being told that I would need to reverse my chair out of the lift I had driven into forwards and enthusiastically commended on how I (with limited mental ability ) managed to turn 90 degrees while reversing out, I regretted the missed opportunity.