Olympia Horse show

Yesterday we took the boys to see the horse show at Olympia. Having been learning to ride for the last 6 months we thought they would like to see what they could do if they kept it up for a few years. Their cousin Alisha came along too and as usual was a great help with the boys. The show started at 1.00 with some showjumping   and went on to include shetland pony grand national, a dog agility competition, a very impressive display from the Met police horse display team, and the obligatory Santa appearance at the end. After the show, luke declared it was the best show he had ever seen; praise indeed and probably the reason why we witnessed the rare event of luke clapping during a show! the only downer on the afternoon was the 3 1\2 hour drive home caused by the 1cm of snow that fell as we left

Lucy

this is a bit of video footage from the summer shortly after we got our new dog, Lucy. For anyone that has been to our house you can see what our other dog Bodie looks like when he's not asleep on the sofa.

Gymkhana

This was the gymkhana the boys took part in at their riding school in cobham. Tracy and the boys have been riding since early summer and are now fairly confident. Its one of the few activities they haven't tired of within a month or two so we are keen to keep it going. All of them did well with Luke coming second ( in case you don't get to the end)

Another Christmas

When I got my diagnosis in November 2007, there were statistically only even odds of seeing Christmas 2008.

So I guess I should be grateful, nearing Christmas 2009, that I'm still here. And although significantly more disabled than 12 months ago and with some respiritory weakness I can (on good days) even envisage making it to Christmas 2010. Despite this, gratitude is not in abundance.

I don't wallow in self pity. I won't give up on something until it becomes impossible. But unlike other MND sufferers I've "met" online I find it impossible to count my blessings and be grateful for what I have because it is such a small fraction of what I had before. Its like a Premiership footballer being transferred to a Conference league team and expecting him to be grateful that he makes the team sheet.

I don't normally whinge too much, because there really is no point, but I don't want to be slowly shutting down without people having some idea of what this is like and knowing who I now am.

My world has shrunk. Observation is almost the only aspect of participation. I remain sane by shutting out thoughts of what I can no longer do. This is effective but isolating. Talking to friends about everyday activities reminds me of what I can't do. My contribution to these conversations is limited to what I did in the past with ever fewer current reference points.

There are so many things I miss. Going for drinks or a meal with friends, driving, working (really), playing football and squash, cycling... the list goes on. But what gets to me more is the almost complete inability to do the most routine things without assistance and having to plan these activities to coincide when assistance is available. Eating, drinking, going to the loo, blowing my nose, putting on a coat, going out, coming back, every detail has to be thought about in advance to ensure I don't find myself in a situation needing assistance when none is there. I'm getting much more cautious about going out by myself. Recent attempts to request assistance from a passer-by have resulted in bemused responses and obvious discomfort as they struggle and fail to understand me. The Iphone which now hangs round my neck is rendered useless by cold inanimate fingers and the weight of my jacket sleeves paralising my arms so I do feel pretty vulnerable and would be struggling if I had a problem. I don't know at what point physical limitations or that fear factor will take away the last element of independence, but they haven't yet.

So, back to that lack of gratitude. Well it is largely due to what this disease has robbed me and 3 boys of as a dad..... on which more I'll write shortly.

I promise I will make the next post festive and cheerie!!
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Terrorvision

From the stadium extravaganza of Muse last month we went to see an equally entertaining band, Terrorvision at the somewhat smaller O2 venue in Islington. We have seen them several times since the mid 90s and they still put on a great gig with a charismatic frontman and a big enough back catalogue to ensure the setlist kept Tracy dancing throughout. Although they actually split up several years back they do 3 or 4 night mini tours every now and again which we try and get to.

You probably know this one

http://www.youtube.com/watch?v=8hLQCA2h8kA&feature=related

but I prefer this

http://www.youtube.com/watch?v=VOOcJobuZTc&feature=related

or this

http://www.youtube.com/watch?v=0Yw4HYKSZuY&feature=related

Like the O2 Area, the Islington Academy is a pig to get to taking over 2 hours. But as the only wheelchair visitor we had a little area roped off to the side of the stage with a pretty good view.

Boys Christmas Concert

OK, This one probably should be tagged as specialist interest only for doting relatives, but feel free to view should you feel the need to experience that timeless (or is that endless) festive event... The Christmas Concert!

Don't buy me golf lessons yet

I've just started in a drug trial with Kings College Hospital. I just scraped through the screening process with a FVC of 72% and started the drugs last Friday. I say "started the drugs " but as with all trials there is a 50/50 chance you'll be in the control group getting a bloody placebo! Mind you, the people talking the real drug in a trial a couple of years back probably wished they'd been getting the placebo as the drugs ended up accelerating there progression. Five days in and nothing to report. I'd entered into a progression 'spurt' a couple of weeks back which has weakened my legs and arms further (my arms are now at the point where if something is not mouse or remote controlled I can't do much with it ) Hopefully I'll stabilise for a bit.

Here are some of the details

Trial participants

In total, 470 patients with ALS will be included in the trial in 5 different countries (France, Germany, the United Kingdom, Belgium and Spain).

Benefit of the trial

You were invited to participate in this trial because you have been diagnosed with ALS. It is possible that you may benefit from this new drug because presumably (as was demonstrated in animal experiments) it can exert protective and regenerative (restoring) effects on the nerve cells and so contribute to reducing your discomfort and symptoms, and slowing disease progression. In the case of your random assignment to the group of patients receiving  placebo-capsules (without active substance) you will not have the potential benefits of this new medication. You may decide to withdraw from this trial at any time, without giving a reason, and without penalty or loss of any rights or benefits to which you are otherwise entitled. In addition, as part of your participation in the trial your health will be closely monitored. Your participation in the study may help patients in the future by giving important information about TRO19622 and the treatment of ALS.

Alternative Treatment

Currently, the only medicine shown to be beneficial in MND is the medicine called riluzole, which you’re already taking. This alters the rate at which MND progresses and in a study of people with MND treated with riluzole or placebo over a period of 18 months, those taking riluzole survived on average 3 months longer than those on placebo.