Thank you so much for sharing this article. I am going to print it to put on our bulletin board for our nurses to read, too.
This might sound a bit odd, but I keep forgetting that my mother has a disability. She has been in a wheelchair since last March (and part-time before that), she has a trach and is vent-dependent, and she is fed through a feeding tube. She receives Social Security Disability checks and is on Medicare even though she isn't anywhere near 65. Yet, the word "disability" still seems foreign. I have taught blind students, deaf students, wheelchair-bound students, and students with learning disabilities. One of my good friends is partially paralyzed after being stabbed in the spinal cord many years ago. And yet my mother's illness seems different.
Maybe it's because of the gradual onset or the age at which these symptoms began to occur, but I always think "illness" instead of--but not in addition to--"disability." Part of our struggle to get the help we need (and, specifically, compassionate and informed assistance on both personal and societal levels) is to recognize that ALS is indeed a disability, and one that will eventually impact almost every aspect of daily living.
Thanks again for giving us something to think about and reminding those of us who are "along for the ride" that we must strive for collaboration, rather than a dependent/caregiver relationship. I always tell my mom that we are a team and "in this together," but I will think more about what exactly that means.