I agree with Ewan Mcgregor's piece of advice.... most of the time

Its been a while since my last blog, getting started on an entry is the biggest barrier, especially if there isn't a specific subject I want to vent about. But I don't want let it slide to a solitary monthly entry because people will stop following it. So I am afraid this entry is being driven by this rather than any inspirational thoughts or events.


Let's start with the MND. I am still 'enjoying' a period of relative stability. My Functional Rating Score has been 12/48 since July 2010 and whilst there has been some deterioration over this period, nothing dramatic has happened. Unfortunately some of the subtle changes still have significant consequences; the strength in my arms might have only changed by 20% in the last year but it has severely impacted on wheelchair operation.

I don't know if this plateau is just one of those that can happen with MND or is related to the drug trial. The latter seems hard to believe as for the first 8 months of the trial there was no slowing of progression. Hopefully the trial participants will soon be told the findings of the initial 18 month trial period and which group each were in. So this may provide an explanation, and in the meantime I guess I should try and be grateful; another person I knew locally died 2 weeks ago. He was the third this year and just one of the many that have gone from the online community. I just wish this respite in deterioration had happened while I could still talk, eat & drink or use my hands; just one of those would have done.

Throughout the first year after diagnosis and for much of the time when I was steadily declining, the thought of dying was never far from my mind. And while that sounds pretty unpleasant, it does help one come to terms with the inevitable conclusion. Of course I still think about it but it hasn't dominated my thoughts to the same extent. After a year of living in this state, I am more preoccupied with the monotony of everything and forfeiting so much. Four years ago I had conditioned myself to the fact that I wouldn't be around in 4 years time and this in hindsight was overly pessimistic. More recently my worry is enduring another few years like this, as if that is the worst case scenario. There are certainly times when dying seems a preferable option but on balance I would normally go with Ewan McGregor's advice and "choose life". So when the more likely scenario dawns on me again, it hits that much harder.