• Russ Newton

ALS Being There

Support Advice



ALS brings with a multitude of changes for the person and their families and beyond. All the obvious physical, emotional and mental health. There is one aspect that can impact all of the above, in certain cases self imposed…isolation. This is a complex topic so I won’t dive into every aspect. I will however focus on one, how anyone can help a person living with ALS. This is not complicated but it can be difficult for some…being present. Being present means exactly that, nothing more; Visiting, Helping, Learning. It can be difficult, why? Several reasons: time, access, distance, and the hardest…being able to witness a loved one because a shell of who they were. Not everyone is equipped to do that last one. I will say this though, the person with ALS is-still-the-same-person! I cannot emphasize this enough. The significant difference is physical abilities, that and the presence of medical devices. That’s it, perhaps additionally is a new perspective on life and priorities. Everything else takes a back seat to being present. Learn what, how and when to step in and help, not just the person with ALS, but the caregiver also. Either one may resist your efforts, but they need it desperately. Being Present is a gift, a gift to each other.


TJ&O (From Reddit, copied and pasted)


Wholeheartedly agree with everything you so eloquently wrote. As a caregiver to my brother with FTLD bv/ALS I often wonder why does everyone seem to avoid and the answers are quite clear. I think that, as you pointed out, the simplest act and just being with someone is a tremendous help. I firsthand have seen the severity of isolation and in our case it might be even more extreme due to the extremely bizarre past behavior that was astonishingly shocking for lack of a better term. This created some seriously difficult trauma that has been difficult to manage. I really would like to see people reaching out more and realizing that these circumstance demand us to come together as these people don't have a lot of time and as you said they are still the same person as they have always been inside.

Thank you

powshralper (copies and pasted from Reddit.)

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