January saw the end of my participation in the MIROCALS clinical trial, finished with a final visit to Sheffield hospital. I will not find out whether I’ve been taking the trial medication or a placebo until the final patient completes the programme. That won’t be until the end of 2020. The bad news is that the project funding makes no provision for those reaching the end of the programme to continue with the medication. If I’ve been one of the 50% taking a placebo, it will make no difference, but if I have been on the trial medication, what might happen now I’ve stopped taking it?
We are indebted to our good friends, Clare and Roger, who drove 45 miles from Stamford to Nottingham, and another 40 miles to take us to Sheffield. They then had to occupy themselves until I’d finished at the hospital before reversing the journey. We were really thankful for their help as, in a repeat of our last visit, the car park was full, with all drivers having to continue round the hospital’s one-way system and try again. Roger was able to find somewhere to unload me and my wheelchair before driving on, returning to re-load us two hours later. True friends.
The good news this month was the announcement of a new, MND multi-drug trial, to be run by Edinburgh University (see https://www.bbc.co.uk/news/av/health-51122189/motor-neurone-disease-trial-offered-to-hundreds-of-patients ). It even made the lead item on the BBC TV 6 o’clock news. I’m told the money for the trial is coming from Doddie Weir’s fund-raising activities.
I took a bit of a tumble this month, fortunately without injury. Ironically it was during a visit by Leslie, the OT, and Fiona, the Physio, from the Community Neurology Team. They were observing me as I walked into our bedroom using my walking frame. Perhaps, aware of my pursuing entourage, I tried to hurry a move I’ve made regularly without incident; or maybe it was a sub-conscious, primordial instinct, trying to impress these two younger women with my athletic prowess, gliding effortlessly(!!) from zimmer frame to bed; but as I moved from the frame to the bed, my left leg suddenly gave way. Whether it was pure luck, or possibly a reaction to the collapse, I don’t know, but I succeeded in toppling backwards, onto the bed, and stopped myself sliding off the bed, onto the floor. I was then able to shuffle backwards, further onto the bed so I could sit up, but not without the further indignity of my elastic-waisted trousers sliding down as I shuffled back, fortunately not too immodestly!
As a result of Leslie and Fiona’s visit, I now have a hospital-type bed which elevates to make it easier to get out of, plus a new walking frame (I’d worn out the rubber feet on the old one), and a perching stool. All this is ‘on loan’ from the British Red Cross; an amazing service.
January 25th was, of course, Burns Night. Doreen and I have attended the Nottingham Scottish Association’s Burns Night nearly every year for the last 20 years, which is why Haywards Heath Golf Club members have rarely seen us at their Burns Night. This year, for the first time, I decided it would be too much for me, but it meant missing my annual infusion of haggis, something I love to eat. I did ask Doreen if she could buy it locally but apparently they are in short supply this year. The mild winter has allowed the wild haggis to stay up in the Highlands rather than making their usual migration south. Fortunately, our daughter, Fiona, came to the rescue, spotting that our local Wetherspoons was having a Burns Weekend with traditional ‘Haggis, Neeps & Tatties’ on the menu, washed down by Harviestoun ‘Haggis Hunter’ ale from Clackmannanshire. Sadly, the beer was ‘off’; perhaps the haggis hunters didn’t come far enough south to deliver it!