Drug Trial latest

Yesterday I was up at Kings Hospital signing up for the second stage of the drug trial during which I will be taking the 'real' drugs! I started the first stage in November 2009, but don't know if I was receiving the drugs or the placebo (and nobody will find out until the end of the trial). I asked whether any trends had been observed over the last 18 months, but they wouldn't comment. This is partly because they also don't know who had which pills, but even if they had noticed a specific group progressing differently they wouldn't be allowed to disclose the information. Furthermore, any differences might just be the result of normal variations. However, my interpretation of his facial expressions while declining to answer, suggested that there might have been some noticeable results.


I guess on balance that I hope I haven't been taking the 'real' drugs and that switching to them now will have a positive impact (I really don't expect anything to be honest), although I am not sure whether I want to have progression slowed or even halted at this stage! Saying that, I remember thinking the same a year ago and now I would happily accept returning and being held at that stage. The drug company claim the possibility of neurone restoration, but of course it needs to happen at a rate greater than that which the disease destroys them.

Since starting the trial my progression has obviously continued in terms of both my actual physical ability and the FRS score used to measure it. In November 2009 my score was 23 out of 48 and its now 13. The fact that it has actually been at 13 since last September is unfortunately more the weakness of the FRS System as opposed to an arrest in deterioration. The FRS comprises 12 questions divided equally into 4 categories; speech & swallowing, arms, legs and respiritory system. Each of the 3 questions in each category has 5 possible responses scored between 0 and 4. The problem is that in my case my score is almost entirely achieved by my breathing still being sufficiently good to score 8 out of 12. The remaining points are awarded for my legs being able to bear weight and that I don't dribble ALL the time (I am a social dribbler!). Everything else reached zero over a year ago.  The deterioration can continue without there being any further reduction in the score creating a false impression of stabilisation.  The question about writing ability hit zero (can't grip pen) over 2 years ago but they don't have -4 for not being able to push a featherweight joystick on a wheelchair. By the way if I was offered the ability to grip one thing again, it wouldn't be a pen!

So I am still not planning to book the water skiing lessons just yet, but as my taxi drove past a Mercedes SLK AMG (my final decent car) on the way back home, I did endulge myself in a rare moment of day dreaming and thought f@@@ it, next time I will get the SLS; that's a promise.





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