1. < Brain & Nervous System
Profile picture for alive

Supporting a friend with ALS

Posted by alive @alive, May 1, 2025

I recently reconnected with a childhood friend who has ALS. She can no longer speak or use her hands. We live in different parts of the country so I can’t do errands or something else tangible to help her. What do I say to her? What shouldn’t I say to her? I plan to visit her this summer.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Profile picture for patricialeclair
patricialeclair | @patricialeclair | 20 hours ago
In reply to @alive "@patricialeclair I went to visit my friend who has ALS last summer. We had a lovely..." + (show)
Profile picture for alive @alive

@patricialeclair I went to visit my friend who has ALS last summer. We had a lovely time recalling our childhood and catching up on how our siblings were doing. Both of our parents and grandparents have passed away and we recalled how we each viewed each other’s parents.

I brought some picture books to show and talk about my life in Arizona and tell her about my family.

My friend was no longer able to move, speak or eat, but she had a tablet that she used to communicate and type with her eye movements. This technology is amazing!

I was concerned that I would ask or say something wrong, so I decided to ask her about her life, especially the years when we were not in touch. We were both born and grew up in Ukraine, but I came to the US as a teenager and she came here when she was in her mid thirties.

I will be in the Midwest once again this summer and hope to spend another weekend visiting her. I don’t know how many more times we will have an opportunity to be together, but I want to show her my love as long as I can.

Jump to this post

@alive thank you
I am afraid i won't be strong enough and my emotions will take over .
I don't want to cry in front of her, I don't want to say the wrong thing but I do want to be there for her.

REPLY
1 reply
Profile picture for patricialeclair
patricialeclair | @patricialeclair | 18 hours ago
In reply to @candreoli "@patricialeclair I know how you feel. I also recently learned that a dear friend was just..." + (show)
Profile picture for candreoli @candreoli

@patricialeclair I know how you feel. I also recently learned that a dear friend was just diagnosed with ALS. I was so scared to visit with him. I did not want to say anything stupid. I am so glad that I did. We laughed a lot and we cried .

I don't normally sign up for groups but I think this is one that I need.

Jump to this post

@candreoli
thanks for the encouragement , it is appreciated

REPLY
Profile picture for alive
alive | @alive | 17 hours ago
In reply to @patricialeclair "@alive thank you I am afraid i won't be strong enough and my emotions will take..." + (show)
Profile picture for patricialeclair @patricialeclair

@alive thank you
I am afraid i won't be strong enough and my emotions will take over .
I don't want to cry in front of her, I don't want to say the wrong thing but I do want to be there for her.

Jump to this post

@patricialeclair It’s okay to cry! Do you have pictures from the past that will bring both of you warm memories? Do you have shared interests, hobbies? It’s also important to let your friend lead the conversation and share as much and as little as she wants about her diagnosis.

My friend’s ALS was very advanced when I saw her and she had processed and accepted her diagnosis. She has a strong faith in God and spends much time in prayer. I let her share those things with me and only asked follow up questions rather than ask the initial personal questions.

REPLY
Profile picture for patricialeclair
patricialeclair | @patricialeclair | 14 hours ago

Thank you for the message, it means a lot. I will see her on Monday .

REPLY
Please sign in or register to post a reply.