What should I say....

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New member
Sep 14, 2006
Friend was DX

I have a friend with ALS that I have worked with for many, many years. We are both on the Ski Patrol and she is also an Ski Instructor. She was skiing last year without use of her arms. This year she can't walk any more. I am hoping she can still come out anyways even if she can't ski.

I was invited to her birthday party. I was wondering if there are any topics I should stay away from? What should I bring as a gift? I feel so bad for her. I don't want to make things worse by saying or giving the wrong thing.
Thanks for your help.
I'd let her lead the conversation. People always seem to say to me Geez AL you look so good. Sometimes it makes me laugh and I say sure for a dying man and other days I just shrug it off. Depending on how close you are to her a nice track suit or sweater for the colder weather might be nice. Better if you can find one that buttons or zips up the front.
A picture of her favorite slope or a sunset would make a good gift as well. Be yourself. If you are close enough to be invited then I'm sure you know her and won't say anything to upset her. Just being there for her might be the best gift of all. Have a good time. AL.

Be natural and ask her how she is doing. She knows she has ALS and if you avoid the subject it will serve only to minimize its importance. I find some people pretend its not happening and speak to me of everything else but and I find that annoying. For a PALS, it's like nobody commenting on the elephant in the room. BTW, I used to be on the Canadian Ski Patrol and skiing is now something I really miss.
Al and John both have good suggestions. I find that people always looked surprised when they see my husband and blurt out "Wow, you look really good" I guess because in their mind maybe they thought he would look much more sickly. But he really is extremely sick and it always sounds awkward when they say it. My husband gets mad when everyone ignores the illness and pretends everything is okay--which is a really common response, even with his family members. Like John said, when you get a chance alone with her just ask her how she is doing and allow her to share as much as she wants. Sometimes she may want to talk, but sometimes may be a bit weary of it, so let her be the guide. And just let her that you are thinking of her and are there for her. You are np doubt a very compassionate friend in that you are already thinking of how to be supportive.
Good Luck and enjoy your time together....Beth
Party was nice...

The party was really nice. It was held at her yacht club (she is also an avid racing sailor) right on the edge of Lake Erie. Many people turned out in support of her 50th birthday and of her life. Maybe she's in comfort somehow knowing that we all care. I know it was bad to say, but she really DID look good. She always did, so why not now?

She must have the rapid version of the disease. I think she's only had it for maybe 2-3 years. She has no use of any limbs and she can no longer speak.

She still has a great big smile and can nod a bit. It was uncomfortable at times holding "one-way" conversations with her. I know she probably wanted to shut up more than a few people including myself. We couldn't tell if we were really talking too much. I talked about things I normally would with her. We all got a smile and a nod no matter what we said.

It must be so hard for someone so active to be trapped in her body now.
Thanks for letting us know how it went Moose. I am sure your friend also really enjoyed seeing and "talking" to her friends even if she couldn't respond verbally.
I know she enjoyed seeing her friends and family. Great that people went out of their way to do it for her.
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