Motor neuron disease

Hi Peter,

I wish your cousin the best. I have first hand experience with Motor Neurone Disease (MND) . My father died last year from it. Its a horrid way to die, especially if one was very active as my father was.

This video you have linked talks about Multiple Sclerosis, not MND. They are different diseases and from what I read about MND, its a blanket term for a variety of diseases that disrupt messages from the brain to the body. But its not MS. MND does not progress uniformly for all people diagnosed with it. Some people have it for years like Stephen Hawking. Others die in a matter of months.

As far as I know there is no treatment for MND. There is no way to beat it and recover from it. Once you lose bodily function, its gone. Eating certain foods doesn't help. My father was very health conscious with his food but it didn't make any difference to getting the disease or not and whether it killed him or not. The only advice I can give is to try to work out how to live at home for as long as possible, ie make the home wheelchair friendly. Make it as easy as possible to get assistance for all bathroom and toilet activities. The easier it is the longer one can stay at home and not have to go to a nursing home. Try to work out how to communicate after the voice is gone and there is limited bodily function.

One needs to decide if life is worth living to the bitter end or not. MND is a progressive illness and there is little pain. So its not like you wake up one morning and find out you are suffering unbearable pain so death is preferable to life. So if a decision is not made one day she may find out life is not worth living anymore but she doesn't have the capability to commit suicide.