Ren-in-Black
13-07-21, 02:33
First off, let me just say that Brian Wallach and his wife Sandra Abrevaya are absolute heroes and I could not do what they've done if I were in their shoes.
Their recent segment on CBS Sunday Morning brought up older feelings of distress however because when they discussed how Wallach discovered he had ALS, first they say he had a cough. But then they mention symptoms that Wallach had noticed but didn't tell his wife. He mentions twitching first. They even cut to a close-up of his arm twitching during the interview. Secondly he says his left hand felt weak.
Maybe it's too fine a point for the general public, but without knowing what I know now, I think I would have interpreted that to mean: his hand twitched, then he felt weak, but he ignored those. Then when his cough got bad he went to the doctor. Twitch then weakness then cough.
Most likely this is the fault of the editors, something they would not have noticed. But it brought up all the old feelings for me. "This twitch in my left hand, that came out of nowhere, is a foreshadowing, a precursor, a sign of what is to come. One day I will wake up and not be able to move this hand muscle."
I just wish the media, as well as ALS informational and advocacy websites, would be more careful about this. So many casually mention that people will notice twitching, cramps, and weakness at first onset. Rarely do you see it said in plain language that twitching is meaningless in the absence of motor function failure. Which has become the most important 10 words in the world for me over the past year.
Thanks for letting me vent.
Their recent segment on CBS Sunday Morning brought up older feelings of distress however because when they discussed how Wallach discovered he had ALS, first they say he had a cough. But then they mention symptoms that Wallach had noticed but didn't tell his wife. He mentions twitching first. They even cut to a close-up of his arm twitching during the interview. Secondly he says his left hand felt weak.
Maybe it's too fine a point for the general public, but without knowing what I know now, I think I would have interpreted that to mean: his hand twitched, then he felt weak, but he ignored those. Then when his cough got bad he went to the doctor. Twitch then weakness then cough.
Most likely this is the fault of the editors, something they would not have noticed. But it brought up all the old feelings for me. "This twitch in my left hand, that came out of nowhere, is a foreshadowing, a precursor, a sign of what is to come. One day I will wake up and not be able to move this hand muscle."
I just wish the media, as well as ALS informational and advocacy websites, would be more careful about this. So many casually mention that people will notice twitching, cramps, and weakness at first onset. Rarely do you see it said in plain language that twitching is meaningless in the absence of motor function failure. Which has become the most important 10 words in the world for me over the past year.
Thanks for letting me vent.