THE ODDS (Debbie Does ALS)


3.06.2009

Whose ALS is "worse"

Saw this on PLM today. I've sometimes thought I would trade my legs. We aren't given the option, though. We have it the way we have it, for better or worse.

I read a comment in another thread that (paraphrasing) [there are many PALS who are "worse" off than a PALS who can still at least stand]. I am really, really bothered by the mentality that someone with ALS who can still stand or walk is automatically "better off" than someone who can't. Obviously, someone who is "locked in" is worse off than someone who is not. They can't even communicate their needs. But who is to say what "disability" is harder on a given person or their family? To some degree, I understand this mindset in the general public. Most people can more readily imagine the changes that would come in their life if they couldn't walk....much more so than they can imagine what it would be like to loose their speech (while still remaining cognitively intact). But I'm disappointed that that kind of comparison is being done here on PLM.

I, for one, would happily trade my legs to have my voice and breathing back. For another PALS, who worked with his hands, loosing arm funciton (while at least having the ability to speak clearly and to walk) would feel like a major loss. Unfortunately, trading with another PALS isn't an option and unfortunately, all ALS eventually ends the same way that my bulbar ALS will. While the FRS measures progression, it is less well-suited to measure life-impact.

Just hoping to raise some awareness of the kind of subtle prejudices that we can harbor even among ourselves.

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