My wife and I just went to see "The Theory of Everything". Eddie Redmayne really captures the essence of someone with ALS. I could identify with so many little touches, like his struggling to pull a sweater over his head, choking on food, fighting to get and keep food on his fork or trying to be understood. He catches Hawking's speech difficulty perfectly. I remember a part when he and Jane had first met and prior to his diagnosis; he was an awkward dancer and he turned down her request for a dance. For my part, knowing what was coming for him I nearly shouted out in the theatre, "Dance with her while you can". It was too late for me.
We could also identify with Jane's decision to marry someone after they had been diagnosed with MND. My girl friend, and now my wife, met me AFTER my diagnosis. Hawking's father tried to dissaude Jane from marrying his son because of the enormous hardships she would face - he thought she was crazy to take it on. My wife married me knowing she was facing the same path. Some women are downright amazing. I did tell her after the movie, and after [SPOILER ALERT for those who don't know Stephen Hawking's biography] Jane had left Stephen, that she could not join the church choir.
I left the movie feeling good about it. It recognizes the horrors of the disease but also celebrates the wonders and joys of life that can still be appreciated fully while living with ALS. Some perhaps more intensely because life and the passage of time is now so much more focused for us.