Further to yesterday’s post, here’s an anonymous entry on another blog by “JohnMND” who, at the point of his writing, was in the early stages of an illness similar to that of the man who died on Sunday. John writes (in part):
“I have recently been diagnosed with motor neurone disease [MND also known as ALS*]. What this means is I will slowly lose the use of my body as the muscles stop working and basically die. I have nearly lost the use of my arms. I can lift a cup of tea using both for a short while, but it will get worse and soon I wont be able to use them at all, although there is no knowing when that will happen. My right leg is starting to give me problems and I will eventually end up in a wheel chair. I will eventually be able to do nothing at all, not even swallow. Food will be fed into my gut by a tube. Someone will have to take me to the toilet and wipe my arse! Something I am not looking forward to at all, although I try to joke about this with my family; all of whom say they are here to help if I need it. My brain will function 100% so I will fully understand what is happening to me but I will probably lose any ability to communicate.
“Do I want to die? NO, at least not yet; the question is will I want to die sometime in the future before I get too bad?? Possibly, who knows. Imagine yourself in that position, would you want to live? Now put into the equation, I am 50 years of age, I have a wife and a young son aged 9. Do I want to see my son grow up and get married and have kids of his own? Obviously YES. Will I? Probably not. Do I want my wife to spend every living moment looking after me, NO. Do I want all the money and investments I have made for my sons future spent on me, NO. Otherwise all the time I spent away from them and all the chances I took to get this for my son was a waste of time. Do I think my son would rather I lived, YES. Do I think my son would want me to live as an object that cannot move, talk or communicate with him at all, probably not, why would he? I will basically be just a body in a chair that he walks by every day and talks to (if I am lucky) with no way of knowing what I would love to say back to him.
” … As for giving up or not being able to stand the pain as someone said. I won’t be in pain, I will just be lying, sitting, or whatever position I have been placed in. … I will have a fully functioning brain but will be able to do absolutely nothing! Try to imagine that for months on end, perhaps years … would you want to live? Of course at that stage I won’t be able to tell anyone what I want! I will feel pain, I will feel, hear and see everything. Will my wife and son suffer more watching me and spending their whole life looking after me than they would if I just died and they could try to get on with their lives … probably, at least that is what I think. It is not like I will be a good father or husband any more, I will just be the guy in the room on a chair that never talks or reacts to either of them.”
*Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) and Lou Gehrig’s disease, is a rare disease in which degeneration of motor nerves leads to progressive weakness and wasting of muscles.
Stay strong.
Stay strong.