How do I get my friend to see people.

[mayaB]

Hello All,
I love to be on here because since I am not in LIVE contact with my friend who has ALS and only e-mail contact it's hard for me to picture what he is going through and from this forum I have learned a lot. Now my question to you all, especially those with ALS..
How do I get him to see me and others, because he has a hard time speaking and is frustrated that people don't understand him, he has shut his friends out. Will not see me or them because of that and plus he is tired all the time..

ANY SUGGESTIONS PLEASE WOULD BE WELCOMED.
I respect his request, but at the same time feel he is shutting himself off of the world and feel this MAY not be good for him.

HELP>>>>>>

 

[BarryG]

I suggest that he come here cause we are the best friends! I am only being a little facetious when I say this, maybe we can help him get out of his isolation.

You say that he has a computer for email, if so he can download a free speech program called Etiloquist so that as long as he can type and his computer has a speaker he will have a voice again. I know what it is like to not be able to speak but thanks to modern technology we don't have to struggle to be understood.

Good luck

 

[brooksea]

Golly! I don't have ALS but my husband does. What he would love more than anything is for ANY friend to show up at our door! He would gather the strength and rest later. He has one friend that comes about once every 2 weeks but the rest of the group......

Just go see him. He may be a little put off or not know what to do but you can handle it if you truly love your friend.

You could really cheer him up by showing how much you care by just being there and maybe helping him do something he can no longer do.

Good luck!

 

[kelly]

I agree...just show up at the door. Do not ask how the person is feeling..because they feel like crap. Maybe bring an uplifting movie...or book to read to him. Talk about what is going on with your life (without to much glamour). Ask if there is anything you can do around the house...this is one I always appreciate for sure. Go for it..we are here for you...let us know how the visit went.

 

[mayaB]

Ho my gosh you guys, I have thought of that sooooooooo many times, but we have not seen each other in 15 years, we talk by e-mail all day every day.. But he seem to be shut off. I am 2 hours away from him ,what if I show up and he rejects my visit. This is why I was asking you guys... DO i not listen to his wishes and just show up. I have told him that for me to just sit besode him and watch a movie wouldbe worth a million dolllars. But he ignores that.
As for the voice thing Barry, he has no function of his hands, he is e-mailling me through headset.. How can I get him a voice apparatus thingy?
I don't think that for now it would be wise for me to tell him that I am seeking strangers opinion on his condition and especially to tell him to come on here, BUT HO MY GOD would it do him some good to speak with other that are in the same boat.

YOU GUYS ARE THE BEST>
THANK YOU!

 

[BarryG]

Maya, I agree that a visit from you would be good for him whether he knows it or not. I know that he might reject you but on the other hand he might not, nothing ventured nothing gained. And you both have so much to gain from a face to face visit.

If he uses a pc to email you then it wouldn't matter how he selected the letters, the speech programs can accept input from an onscreen keyboard or an actual one. Or even if he didn't get his machine to actually speak he could type messages and you could read them off the screen. He must have some way of communicating with his caregivers so he would be able to communicate with you.

Go see him

 

[mayaB]

Maybe I will take your advice, but I am still scared.. LOL
I just hope I can get the courage to do it... Should I tell his familly or just hsow up?

 

[joelc]

Just show up. I encourage you to do that.

 

[Chief]

Just show up with flowers and a Smile :mrgreen:.......even if he rejects you......he'll always remember you came to visit.:wink:

 

[irismarie]

i agree. Go for it!dont you ever remember digging your heels in over something when in your heart you really really really wanted to give in? Take him a gift of a whiteboard so you can communicate right away.
Good luck and remember you are acting from love so it cannot be wrong

 

[indigosd]

Have you left yet?! Excellent advice as usual from the forum family :] Our experience is that this disease is ISOLATING. We too are socially isolated. Part of it is that Web finds it so difficult to try to speak to people.... The other part is that people are usually very uncomfortable with the reality of ALS. The few times that someone has made the effort to spend time with him has meant the world to him. Do take a "white board" and maybe download the speaking program for him while you are there-I know that you are going! Thank you for being such a good friend.

 

[indigosd]

Read this thread- fabulous advice! https://www.alsforums.com/forum/gen...s-mnd/11102-talking-people-who-cant-talk.html

 

[Katie C]

Yup.. just show up at the door! Maybe bring a movie (movies are great, cuz nobody has to talk!) If he won't let you in, take yourself out to lunch and you've had a lovely day. AND... you will then know you have tried. Go for it girl.. you know you want to!

 

[sesl]

Does he have someone who can let you in the door if you knock? If so then I agree with the others - just show up, but only expect to stay for 10-15 minutes because a visit could be quite tiring depending on where he's at with the progression of his disease.

You can always stay longer if he's up to it.

You could always say that you needed to be in his area for some other reason and you couldn't drive by without calling in . . .

My mother is so blessed. Some of her friends are keeping away (I think many are afraid and some have said outright that they want to "remember her the way she was"). But the ones who live close by are dropping in a lot, and some even travel monthly from a few hours away to see her. They usually come in groups of 2 or 3 so that they can keep the conversation flowing and then my mother doesn't have to do that stop-start communication with the whiteboard. But everyone understands that if she starts writing they need to wait for her to finish. Hardly a day goes by without someone dropping in.

As for your situation - if you do go and you get rejected, then you will know that you tried. If you don't go then you'll feel guilty forever. Go!

sesl

 

[mayaB]

Ha, you guys.... Yes He always has someone there with him... So they could open the door for me, I have thought of calling his sisters and telling them what I want to do and get their input. As for seing him the way he is now I DON"T CARE ABOUT THAT... All I care about is him..
He does'nt believe me, don't get me wrong I know I am in for a shock but it's ok.. I don't want him to be alone in this. Anyhow I will get my courage up and hopefully make the drive out there tomorrow....

THANK YOU ALL SOOOOOOOOOO MUCH.....
hopefully I can convince him to come on here, I think it would be great for him to speak to other people that are in the same boat, but have such a positive attitude...