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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.

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patricialeclair | @patricialeclair | 4 days ago
In reply to @alive "@patricialeclair I went to visit my friend who has ALS last summer. We had a lovely..." + (show)
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@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.

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@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.

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patricialeclair | @patricialeclair | 4 days ago
In reply to @candreoli "@patricialeclair I know how you feel. I also recently learned that a dear friend was just..." + (show)
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@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.

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@candreoli
thanks for the encouragement , it is appreciated

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alive | @alive | 4 days ago
In reply to @patricialeclair "@alive thank you I am afraid i won't be strong enough and my emotions will take..." + (show)
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@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.

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@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.

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patricialeclair | @patricialeclair | 4 days ago

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

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patricialeclair | @patricialeclair | 2 days 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.

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@alive thank you for the upliving messge

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ellu | @ellu | 1 day ago

Hello people, how kind you are to be thinking of your friend with ALS. I have ALS myself (still relatively early stages) and am learning to deal with symptoms as they progress. From my own experience, here are some things that matter to me : 1) Don't let ALS be the elephant in the room. Don't avoid mentioning it and have only "cheery" things to say to your friend. Give him/her the opportuity to talk about their illness if they want to - it has enormous physical and mental effects, and sometimes people want to discuss difficult future prospects and worries about disease progression and dying. Give him/her the opportunity - if they don't want to talk about it,
then that is OK too. 2) Don't say to your friend "You are looking very well". This is an insult, and shuts off any conversation your friend might want to have about the situation. 3) Your friend may need physical help, but continue to treat him/her as a person, not as an "invalid". I feel my limitations every day, but I really appreciate it when people treat me the same way as they would any friend. "I" am still here, inside my body, and I am still interested in the same things I always have. 4) don't just ask "Can I do anything to help?". We ALS people still have our pride, and we don't like asking for help. Instead, ask if you can help with specific things. For example, "would you like me to do some shopping for you?", "while I am here, can I put through a load of washing?" "while I make some coffee, let me give your kitchen a wipe-over", "Do you have any cards or letters you could dictate to me so I can write them for you?" " Would you like me to drive you to your doctor's appointment?"The little things you take for granted are difficult for us to do, and it is depressing to watch chores pile up. Ask your friend to make a list of things which need to be done, and if you can't help with everything, pass it on to other friends. Don't be afraid to approach a friend who has ALS, We are still the same peple, we won't bite! Don't worry about 'not knowing what to say' or 'saying the wrong thing'. Be honest, speak from your heart, and don't feel you have to avoid difficule/confronting topics. For me, personally, it is great to have friends who treat me the same as everybody else, as dispite my physical issues I am still the same person I always was.
@ellu

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ellu | @ellu | 1 day ago

from @ellu P.S. if you and your friend are too far away to met up, don't forget the phone and video chat. Another thing that gives me pleasure, as an ALS sufferer, is to receive the occasional surprise card in the mail. All you have to write is something like "thinking of you" or " something or other made me think of you today". It is nice to be reminded that friends are still thinking of you, even if you can't manage conact in person.
@ellu

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candreoli | @candreoli | 1 day ago
In reply to @ellu "from @ellu P.S. if you and your friend are too far away to met up, don't..." + (show)
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from @ellu P.S. if you and your friend are too far away to met up, don't forget the phone and video chat. Another thing that gives me pleasure, as an ALS sufferer, is to receive the occasional surprise card in the mail. All you have to write is something like "thinking of you" or " something or other made me think of you today". It is nice to be reminded that friends are still thinking of you, even if you can't manage conact in person.
@ellu

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@ellu
Thank you for this. I do not live near my newly diagnosed friend (about 3 hours by car) and I work fulltime. If I could, would be there each day for him. We are texting and emailing. I want to suggest a video call but was unsure if I should. Now I will suggest it.

I am unsure of what to say about my life. Do I share the good things that happen to me? Or the bad? My day to day seems so trivial by comparison.

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