I learn a new disease last Thursday, a new term, a new accronym: ALS
Here's my little story ... and after it, I will add my questions ..
3 days ago, my wife got a phone call from her mother (61yo). She had been diagnose with ALS about a month ago.
Me and my wife stay quite far from her (about 1000km). So we only visit once or twice a year. And the last time we saw her was last March ... where she looked ok and we wouldn't have guessed (other than she seemed more tired than usual).
As my wife said, it has hit us as hard as hitting a wall of brick. I can only imagine herself and her husband (which I heard find that very hard). Everything is so new, and I am sure everyone will go thru the accepting phase ...
We are going to see her again in a week from now.
Very short story, but one that is important for my questions ... the fact that we won't see her often and that we have 5 children (aged between 9yo and 17yo).
I understand that it is a day by day life for her ... and that the speed of the disease is different from one person to another ... but the reality of our life does not allow us to be with her on a day to day basis. We will do every effort to go as often as possible ... but what is 3 months? what is 6 months?
What/How can we prepare our own children? All they know about her is that she has always taken care of them ... she was the strongest of all their grand parents.
All the information online is scary. Life expendency of 4 years. Some go as high as 10 years. But what about quality of living? If she is "ok" today, how will she be in 6 months from now?
Is accepting the disease and the downgrade of quality of living the only hope? Or can we actually hope for a stop, slower progress, or even full recovery?
How can we measure the stage of the disease?
I am sorry for my lack of knowledge. I read a lot about it in the last 3 days ... my wife hasn't slept most of the time.