Firstly while the muscles are wasting they just keep twitching, these twitchings are called festiculations. I watch Chris and his muscles and they never stop...twitch, twitch bloody twitch. It is like the muscles are trying to fire, but never quite make it, mini explosions under the skin. I don't quite understand the physiology of festiculations, but the continuous contractions of muscles throughout the body is very tiring on it's own. They twitch 24/7 from the feet to the tongue and some are so strong that they are visible through his clothes. These muscles are on overtime, trying to do, goodness knows what.
Secondly these muscles are wasting, slowly dying, disappearing from the body. If you have fewer muscles then those that are left have to work harder, that too is very tiring. Just moving from a wheelchair to an arm chair or bed is exhausting. The muscles can waste every where in the ALS type of MND. When they waste in the chest, that is scary, fewer muscles means they have to work overtime to keep the body oxygenated, less oxygen in the body causes tiredness and it also means it is harder for the body to expel CO2 and that can cause it's own problems. When the chest muscles and diaphram fail completely, then with out mechanical help, that is it, the end. The muscles in the throat get so weak and tired that you can no longer swallow so you can no longer eat or drink, eventually those weak muscles will stop you speaking too.
Thirdly, in Chris's case, the choking and gagging are extremely distressing and tiring. The body tries to expel the mucous and gunk, but Chris can no longer cough and the only way is to urge it up. An episode can last an hour or more and it is extremely scary as well as exhausting as hell for him.
It is tough for a man who would be up at the crack of dawn and not get to bed till late at night, who worked practically 365 days a year and loved every minute of it. A man who in spite of his skinny frame was extremely strong, who would stay up all night to help a cow with a difficult birth, who would work in all weathers and never complain, who had the appetite of three men.
It is little wonder, along with the changes this disease is constantly throwing at him, that he gets a little low sometimes, I am staggered it doesn't happen more often. I have said before that it is his quiet strength that keeps me strong, not the other way around and when he is low, I am low with him.
The technology that is available these days in incredible and each item helps a little in alleviating the tiredness MND causes, but they won't make it go away, they won't cure it, meanwhile every day a little more muscle dies from somewhere in the body and everyday the person with MND gets a little more tireder and of course, a little more closer to the inevitable.
