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MND Life

61. Stepping Out

With Christmas and New Year festivities over, and Spring still some way off, January is usually a bleak month, but it can be brightened up by sport from sunnier climes. In the Australian Open tennis, several Brits had good runs, but watching Andy Murray win through two gruelling 5-set matches, now aged 35, and after hip surgery, was really enthralling. Then came the Dubai Desert Classic golf, with the added spice of the ongoing spat between Northern Ireland’s Rory McIlroy and American ‘LIV rebel’, Patrick Reed. In a tense final round, McIlroy did just enough to win. Great stuff!

One thing to look forward to every January is Burns Night on the 25th, when Scots all over the World ceremonially celebrate the life of our national poet, Robert ‘Rabbie’ Burns, with haggis an obligatory part of the menu. Doreen and I used to attend the Nottingham Scottish Association’s Burns Night every year, travelling up from Sussex to stay with my sister, until MND intervened. It was usually the only time each year when I was able to eat haggis, something I have missed. On the morning of the 25th, however, I mentioned over breakfast that it was Burns Night, and Doreen volunteered to try and buy a haggis locally. I had little expectation of success, and sure enough, neither Sainsbury’s nor the Co-op stocked it, but amazingly our local butcher did! Doreen returned home with a large haggis.

In September 2020, I wrote about our freezer being the haggis equivalent of the Bermuda Triangle (see: https://davidsmndblog.co.uk/mnd-life/33-the-haggis-bermuda-triangle/ ). Many a brave haggis has entered our freezer, never to be seen again! This one was spared that fate as it was to be cooked and eaten that same day. We were able to celebrate that evening in traditional style, even including a tot of malt whiskey. We did offer some haggis to Monique, my carer that evening, but she was not having any of it! Lenu, however, who had been with us that morning, was very keen to try it so we saved some for him on his next shift. I don’t think he was overly impressed but he did eat it all.

It was a difficult month for me, physically. The declining strength in my shoulder and neck muscles has continued such that I now find it difficult to hold my head upright. It tends to droop forward and to the left unless supported by my neck collar, which becomes very irritating after a time. The collar also affects my speech making it less intelligible to my voice-to-text software. Writing is getting even slower! I am also experiencing more neck, back and shoulder pain. My medical team prescribed a new drug to calm my stomach, making it more tolerant of stronger painkillers but a few days after starting it, I began to experience apparent side-effects (nausea/vomiting, insomnia, and bowel problems). My GP became involved, arranged for a blood sample to be taken, and sent me a DIY stool-sample kit. The problem with that is that I can’t ‘DIY’ anything any more, so one of my carers would have to do it. They are sometimes faced with unpleasant tasks, and always tackle them cheerfully but, unsurprisingly, no-one was in a hurry to volunteer for this one!  

January is traditionally when people make New Year resolutions, usually about life-style changes such as eating or drinking less, or exercising more. Few people manage to continue them, even until the end of the month. Our daughter, Fiona, went one step further. In fact, she went thousands of steps further. She committed to complete 15,000 steps every day in January, three-times her normal daily average, in aid of MND research. Fiona is active in many ways. She is a working mother of two young children, a school governor, and is very keen on amateur dramatics, but sports, or any kind of organised exercise are complete anathema to her. To take on this target was a very serious challenge. I’m delighted to say, though, that she stuck to it and raised £1,900 for MNDA. Her comment afterwards?: “Never again!!”