1. < Brain & Nervous System

Supporting a friend with ALS

Posted by alive @alive, 3 days ago

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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cctee | @cctee | 3 days ago

If you have old photos or memories make a video of some good times you shared, since she can watch and it does not require speaking or typing. Leaving her some loving messages and being open about how much she means to you would be a beautiful way to support her. Prayers for your friends, her family and you her dear friend.

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1 reply
Scott R L | @scottrl | 3 days ago

Although your friend is severely affected, she's still a human being.

Just let her know that you are still her friend, no matter what.

Many people, myself included, feel abandoned after a traumatic event.

Could you call her, read her favorite poems to her, tell her stories from when you weren't in touch?

If she's religious, are there inspirational quotes or other writings that you could read to her?

It can be difficult to know what she might want to hear, or want not to hear. Is there a way to find out?

In any event, God bless you for having a caring heart and wanting to help.

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1 reply
alive | @alive | 3 days ago
In reply to @scottrl "Although your friend is severely affected, she's still a human being. Just let her know that..." + (show)
@scottrl

Although your friend is severely affected, she's still a human being.

Just let her know that you are still her friend, no matter what.

Many people, myself included, feel abandoned after a traumatic event.

Could you call her, read her favorite poems to her, tell her stories from when you weren't in touch?

If she's religious, are there inspirational quotes or other writings that you could read to her?

It can be difficult to know what she might want to hear, or want not to hear. Is there a way to find out?

In any event, God bless you for having a caring heart and wanting to help.

Jump to this post

Great suggestions! I am in touch with one of her daughter’s, so I will ask her.

My friend is able to type with eye movements, so I shared a few pictures of what my life is like where I live. She sent me some pictures of her spring flowers.

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alive | @alive | 3 days ago
In reply to @cctee "If you have old photos or memories make a video of some good times you shared,..." + (show)
@cctee

If you have old photos or memories make a video of some good times you shared, since she can watch and it does not require speaking or typing. Leaving her some loving messages and being open about how much she means to you would be a beautiful way to support her. Prayers for your friends, her family and you her dear friend.

Jump to this post

I have a few old pictures of us as children. That’s a great idea to share those pictures with her!

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dlydailyhope | @dlydailyhope | 2 days ago

@alive
It would be good to communicate through email to share your memories of the past and thoughts. You can share what is going on in your life now. You can share pictures and videos of yourself/family/pets/home. Her eyes and ears are still functioning so anything visual and audible I’m sure would be appreciated.

Does she have family/friends locally that are helping her and can communicate on her behalf?

If you were able to do a FaceTime or Zoom call, you can create a way to communicate with eye movement (ask yes/no questions and have a way for her to respond with eye blinking, one blink for yes and two blinks for no).
https://www.youralsguide.com/family--friends.html

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1 reply
alive | @alive | 2 days ago
In reply to @dlydailyhope "@alive It would be good to communicate through email to share your memories of the past..." + (show)
@dlydailyhope

@alive
It would be good to communicate through email to share your memories of the past and thoughts. You can share what is going on in your life now. You can share pictures and videos of yourself/family/pets/home. Her eyes and ears are still functioning so anything visual and audible I’m sure would be appreciated.

Does she have family/friends locally that are helping her and can communicate on her behalf?

If you were able to do a FaceTime or Zoom call, you can create a way to communicate with eye movement (ask yes/no questions and have a way for her to respond with eye blinking, one blink for yes and two blinks for no).
https://www.youralsguide.com/family--friends.html

Jump to this post

Thank you for your suggestions! I have a lot of fond memories to share with her. Yes, she lives with her husband and two adult children. They take an excellent care of her.

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