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...


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.


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


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.

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.

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.