You’ll get better right?
Isn’t it nice not having to work anymore.
Well, you don’t look sick, it must not be that bad.
Didn’t they cure it with the ice bucket challenge?
Your spouse is still able to walk, why do you have to stay home with them?
Your child is young. ALS doesn’t affect young people. Are you sure it’s ALS?

Many persons and family members affected by ALS have heard the statements above. Sadly many have heard this from actual family members, even some caregivers.

What don’t you get about ALS and how devastating it is!?

We have been told we are dying, six months to a year for some, two to five on average for most. How would you handle this news, delivered in a cold clinical setting, in a matter of fact fashion. “We’ll give you a few minutes, but we will need the exam room shortly.”

This is followed by gleaning what your mind can absorb off of the tidal wave of information thrust on us. Coming to terms with ALS is an individual journey, time is not on our side. But come to terms with it we must.

Given how ALS ravages our bodies, how can you be so insensitive as to utter words such as those above. We witness others further in this condition and our spirits break. Knowing our future state and eventual demise, yet we persevere, and so do our families.

All we ask is that you acknowledge our ALS, the fatality of it, and please, for the love of anything you hold dear, don’t be patronizing. If you are, you might end up with broken toes or bruised shins!

Juan Reye
TJO