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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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.

What's worse than having MND....

Having MND and a stinking cold. Its the last thing I needed. The last bad one I had was last year but at least then I could blow my nose! Now I cannot lift my arms high enough and I dont have enough puff to have much affect. On the plus side, as the cold goes away its nice to experience the sensation of feeling better than befor; a sensation which has been alien to me for two years.

Pissed off

Second night in a row to have friends over and not be able to contribute to conversations. Stammer and slurring combining to make me unintelligable. Have left to go on computer. I'm sick of the constant struggle and feeling uncharacteristically defeated

I know that overall I'm still fortunate in that I am still active albeit wheelchair bound. I'm not on a vent yet but each progression still hits hard and although nothing has changed dramatically, in the last couple of weeks there been deterioration in several areas and being almost crippled verbally tonight made me feel isolated and depressed. We have friends over again next week and not really looking forward to it. I don't want to isolate myself socially, I spend too much time by myself as it is, but I'm still finding seeing friends hard as its become yet another activity which only serves to remind me of this bloody illness

Cold weather

have been spoiled by the warm weather. Getting out is such a pain and unlike last winter I need to have someone to help get everything on and be sure someone is here when I return to get it all off again