Fun Stuff To Do When Visiting Friend

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Miku

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A friend of mine has ALS. He’s having trouble talking now. He can still use his phone to do short text messaging, but doing things with his hands seems difficult. I’m just wondering what kind of activities would be best. We talk when I come, but I was thinking maybe a movie or something too… I have cerebral palsy myself. The last thing I wanna do is say or do something awkward or offensive. I know what it’s like to be on the receiving end of that. I just don’t wanna be too forward.

He’s a super awesome dude, I know he misses work and doing a lot of different stuff he used to do so I want to make it fun when I come.
 

Nikki J

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you are an awesome friend. I would never be offended at an honest question about what I can do or want to do.

Is he mobile? Some PALS can not speak or use their hands but can walk fine. Doing something outside or going somewhere might work depending on his abilities and yours. Hanging out and watching a movie or sports would be great too. Do you know if he can swallow ok? Maybe ask if there is a treat he would like?

The most important parts are showing up and treating him like a real person. I suspect you know exactly what I mean. Treat him as you like others to treat you. He has limitations but inside he is the same guy
 

lgelb

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Say to him what you said to us, and see what pops up! Also, since he's having problems using his hands, if you are able to do yourself or organize "gadget setup," or some adapted form of something that he enjoys doing, that can be helpful.



Thanks for being his friend.
 

Miku

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Thanks for the replies!

Since he’s not in his home right now I’ve asked him many times if there’s anything that I can bring him. Snacks, toiletries, ECT. He always declines. I was thinking of bringing my laptop so I could have something on Netflix that we could watch. Music wise I think he’s because he has his phone.

My main goal is to get a bunch of people together to visit him all at once… People always trying to brush me off when I asked him to go with me. Some folks at flat out told me they’re uncomfortable with the situation. I still encourage them to go.
 

whereswaldo

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You are a true friend. I am a little farther along than your friend and just having someone hang out with is a nice thing and let things happen on their own. You will figure what to do, compassion and friends can go a long way.

Also if it is hard for him to speak or understand him, make your questions or something that would require a response, so that a simple yes or no can be an easy answer. If he wants to say more, that can be up to him.

Thanks for being a friend. They are always appreciated.
 

affected

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Sometimes when speech is affected particularly, it can be overwhelming to have a bunch of people visit at once. The conversation goes on around the person and they can't seem to join in and can feel really isolated.

The fatigue of ALS can make this exhausting.

I would suggest no more than a couple of people at once, and giving him time to be part of any conversation.

Movies sound like a great way to be with him without, enjoy something, but be able to relax a bit and not overtax. Thanks for being an awesome friend!
 

KimT

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If the weather permits, maybe getting him outside would be nice. Your laptop is a good idea.

You are a wonderful friend.
 

Miku

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I was thinking about the fatigue is well. Cerebral palsy can zap your energy at times so I can only imagine that a ALS is similar. I’ve read a lot about asking yes or no questions but I was always afraid that… I don’t know. I was afraid of doing or saying the wrong thing. Would asking simple questions insult his intelligence? Would asking him what he’s capable of doing or what he likes to do now make him sad?

I’ve communicated with people that have had difficulty speaking but they’ve been that way their whole life. He’s been having trouble speaking for several months, but not his whole life. I guess the only thing I can do is be myself and flat out ask him what’s best for him. He still the same dude that I worked with… I guess I just got a learn how to navigate around his difficulties just like you learn to navigate around mine.
 

wishmobbing

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Just came home from a barbeque and my PALS was not only in the company of the friend who promised to take care of him and watch movies with him while I was away but also two bonus friends who dropped in. Those are the people that really really matter. Glad you want to be one of those.
 

Jrzygrl

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My DH enjoys visits from friends SO much. They will sometimes listen to music or watch TV. Sometimes they just talk. He just likes to feel a part of things. We live near a local high school, so he will sometimes go to a football or baseball game - he loves sports.

Just the fact that you stop by speaks volumes.
 

KarenNWendyn

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Great ideas mentioned. Also, depending on what he likes, going out to a movie, concert, play, or show could be fun. Certainly sporting events. Being in a park or other outdoor setting would be nice. If he can eat, a picnic in the park.
 

Miku

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These are all really good ideas. I’m not sure if we can do it but a buddy of mine and I work in IT. I really want to see if we can do something regarding eye-movement based software for him. I think it may be helpful for him and then it would not be weird to transition to if needed because, you know we made it for him. :)
 

terris

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I found getting on a regular schedule to see my friend gave us both something to look forward to, she set the day and time each week...sometimes twice a week and I would be there. Things were easier at first when she could speak . She preferred to write after than and I would hold a note book for her. Her progression was very fast and each week she wanted to tell me about all that was happening to her, I listened and tried my best to comfort her. I found just speaking from my heart worked the best. I was able to tell her how much I loved her and how brave she was to battle through and deal with the day to day loses she was dealing with. I would check this site everyday, find tips that helped and talk with her about them. We had some some days we laughed, and as this progressed we had days we cried together. I followed her lead. I always wanted to honor how she was feeling and would go with it.
It was 11 short months and I am grateful for all the moments we had together. She is now at peace and although I miss her so much, her courage changed my perspective on life.
 

Miku

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Thank you so much for sharing it. You sound like an amazing friend. I too am using this for him is a good resource. It helps us to understand how to be the best of friends is somebody going through AlS
 
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