I am Peter North, married and living in UK. I was 65 in 2020 when I was diagnosed with motor neurone disease (ALS variant). I didn’t know much about the disease before I started researching in earnest the numerous, random symptoms I’d been experiencing for about two years. I’d known a few people with the disease, and I knew that it was a devastating illness with no cure and consequently they had been robbed of many years of life.
When you’ve been diagnosed, you can’t help thinking ‘why me?’ and ‘what have I done to deserve this?!’ but you have to move on from this inevitable stage. My advice is to accept the inevitable when you’ve thought long and hard about it, and then to live your life as positively as you can. It’s not possible to turn back the clock.
I was formally diagnosed with MND in October 2020. For months, possibly years, I’d been experiencing odd symptoms. So, my diary posts start in mid 2018 when I think the first indications presented.
About My Neuro Diary
This isn’t a diary of everything that’s happening in my life, it’s focused on MND. But don’t think that life comes to a total grinding halt after the diagnosis; there’s still lots to enjoy. You can even get a sense of satisfaction from drawing up a plan of the measures you’re going to the take in order to live more comfortably with the disease. Having said that, having a devastating diagnosis during a pandemic has made life very difficult indeed and the separation from friends and loved ones has been particularly cruel.
But I’m not writing this diary to inspire feelings of sympathy, and to complain about my lot. I now know so much more about MND, and I’d like to share some of what I’ve learnt and experienced. Hopefully some of it may help others who have to follow me down this track.
So, having collected my thoughts, I’m setting up this diary in March 2021 and I’ve written retrospective posts to cover the period from May 2018. My aim is to be open and informative about living with MND. My view is that you can’t fight this disease and win, however you can engage with it tactically and try to stay one step ahead.
I think it’s better not to name any of the scores of people who are caring for me and supporting us both while I am living with MND. I don’t want to single people out, or cause embarrassment, however I do want to express my heartfelt thanks for all the help and kindness we’re receiving. Above all, of course, I want to thank my darling wife Sue, our two sons, and our family and friends. They didn’t sign up for this experience either, but their love and constant support has been infallible; for that I am extremely grateful and feel very fortunate.
March 2021