what to say?

[terrics]

My friend was just diagnosed with ALS. ( there was the possibility of conversion disorder.) Since then she went to georgia ( we live in NY) and had work ups by numerous drs. Her sister is an M.D., and set up appointments for her. One was an ALS specialist.

I don' t know what to say to her. Other than our usual conversation, I ask her how she is. Can you help? What are some things people said to you that helped you?

 

[starente15]

Hi Terrics. Sorry to hear about your friend's diagnosis.

My dad has ALS and I know a lot of people don't know what to do or say. Personally, I try to keep conversations as normal as possible. While he can't do a lot of what he used to, i.e., woodworking, home repairs, etc. my boyfriend has been great about keeping him engaged in asking his opinion on how to do things around the house. Don't assume you should exclude them just because they have to do things differently. We recently had to get a package shipped to my house when I was visiting them. While he would normally have done this himself, he directed me every step of the way; cut it like this, tape it like that, It was his way of still participating.

 

[Vincent]

Treat her no different than you always have. How are you becomes sort of a loaded question at this point. Try asking how today is going. More than anything you have nothing to say so profound as to change anything. So listen.
Vincent

 

[Atsugi]

Terrics, just continue being there. Everyone knows there is just nothing you can say to make things better. But if you back away now, it certainly won't help.

You might look for things you can do to make her life a little easier. At some point it will be difficult for your friend to cook or do chores.

 

[Nikki J]

Agree be there and treat her normally but maybe also try to give her some fun experiences and make her laugh.
Depends on how disabled she is what sort of things. If you can take her out that is great if not think of things you enjoy doing together and how you can continue to do them. Even if modified. Do remember she will tire more quickly now.
She is probably still interested in your life too. Don't whine endlessly ( not that you would) but include her in talking about problems you might have if you would have before. Star's example illustrates well we still need to feel helpful and necessary

 

[cheerleader]

My hubby's big fear was that people would pity him and treat him differently! Vincent and Star are right on! Have the same conversations you would normally have and if she wants to talk about the elephant in the room, she will. Invite her to lunch, the movies- whatever things you would normally do. Two of my hubby's friends took him out each week- one for lunch, and one for breakfast- and never said a word about it when he had to be picked up because he could no longer drive (or eat regular food for that matter!). What mattered was they teased him, harassed him and relived every golf stroke they had ever taken. In other words, it was life as usual. They will always be earthly angels in my book and despite the pain he endured sitting on hard restaurant chairs, and only drinking a cup of coffee while they ate, those outings were the high point of his week. He was"normal" during those times and knew he was loved! If you can't do outing, silly thinking of you cards are always great. He looked forward to mail time, and the occasional book or movie that was sent to him. Words are not as important as showing you care in a million small ways. Take her a pint of her favorite ice cream or her favorite chocolates ( all calories are encouraged with ALS! A free pass for us girls!). Offer to pick up anything she might need at the grocery store or if she has kids offer to drive them to whatever. Terri'cs, the fact that you are here shows what a loving friend you are. Your presence in her life is so important now. Keep us posted and encourage your friend to come here where she can rant, rave, get advice from the experts who are living it. Donna

 

[starente15]

Your husband was so lucky to have great friends who stood by him Donna! I love hearing stories like that.

 

[swalker]

Hi Terrics,

I echo the advice to just be your normal self. Offers of help are very much appreciated. I like being outside, so when I have visitors we often go for a stroll with the wheelchair.

I would like to offer some advice on what not to say, unless it is really necessary. That is the one-word question of "What?". Many folks affected by this disease have trouble speaking. Saying something once is hard enough. Saying it twice gets annoying pretty quickly.

Instead of asking them to repeat what they have said, try to puzzle it out. Suggest potential meanings so they can indicate yes or no. It can make a big difference.

Steve

 

[Green Queen]

What do I add? Everyone has given great tips.
Being treated as per normal is good.
Being a caring friend is what she needs, don't stress though if you don't talk to her for a few days at a time. She will be well aware that everyone has a life to lead. Sending a quick text to say hi, an email, even a message on the answering machine means she knows you are still there. Being deserted by people is a common thing, and one thing she won't need. Progression is something that is very noticeable when you are not around, as you live in different states. This is from my point of view, your friend may be different, but I don't mind when I discuss problems with progression; to me it shows my friends are interested in 'me', as progression and dealing with it is a very big part of who I am.
All the best with advice given by everyone.
God bless, Janelle x

 

[gooseberry]

As others have said, I would treat her normally. Look for ways to help her by becoming knowledgeable about als. Does she need a ramp? Can you build one? If you do help with things like this, make sure you leave plenty of time to just spend with her. Just be aware she may tire more easily.

 

[Nuts]

I see great advice in this thread. I'll echo the thought that treating her normally is the kindest thing you can do. She is still herself. The body fails. but the mind remains intact.

Additionally, you might say to her what you've said here. Tell her that you are worried about saying the wrong thing and let her know that if you do she should tell you.

Finally, people often offer to help by saying "just let me know". You can ask her what she needs, but also make specific offers. Cook a meal, clean the house, help her in the yard. Just keep being her friend. You've made a wonderful start by asking here--that shows committment. Too many people fade away when t his disease rears it's ugly head. Thank you for being a true friend.

 

[terrics]

Thank you all for some really good suggestions. My friend is still in NY. She is moving to Georgia after she gets her house up here emptied. She has some male friends helping her with that. We text often.