Hello, my name is Lesley Roberts and my husband Christopher, who was a farmer, was diagnosed with MND on May 5th 2014, sadly he lost his courageous fight with this awful disease on September 5th 2015. I wrote this blog to ,share our journey as a family with this disease, the good days and the the bad days and hope to raise awareness of MND in the process. (Follow on Google+ or on Twitter for updates at @soulpunkpixie, or sign up at the bottom of the page for email notification.)
Friday, 27 June 2014
No.9.Manifestations of festiculations
I knew a little about MND before it darkened our lives, but I didn`t know about the muscle twitching, or festiculations, which is their medical term. We`ve all had a twitch now and then, I get one in my eye sometimes, but with MND it is a whole new ball game. Chris`s muscle twitches start at the top of his head and end at his feet. They twitch 24/7 everyday. They even include his tongue. When I cuddle him, I can feel his body twitching away, never letting him rest. I tried to think what it reminded me of. I guess if each twitch was a light and he was in the dark, it would look like 100`s of fire flies switching on and off, but then I thought no, it was as if the muscles were struggling to hold on to their individual lives, trying to fire back up into life, before the black shadow of MND consumes them and the image of a shoal of fish just harvested from the sea came to mind. The way they flap about on deck, gasping for breath in our alien air. OK, I guess that`s just a bit dramatic, but I hope you get the picture. The physio said the festicualtions alone are very tiring as the muscles are always working. This all adds to the unwanted calorie burning and weight loss due to muscle wasting and although we try to get on with each day without MND on our minds, for us it is a never ending reminder at this early stage, physically for him and visibly for us, of it`s slow onslaught.