Trying to comfort friend-ALS

[guitarzan]

As some of you already know, one of my best friends, age 46, was diagnosed last week with ALS, lou gehrigs disease. This is the same friend I went and visited in Orlando a few months back, when I posted the pics of us at nasa and stuff. We just got back from Disney world today, and I was able to visit him last night. His symptoms started about s month ago, and already he is struggling to talk and do basic functions, like holding a fork and eating. I looked up some info on als, hoping to find something that I could say to possibly give him some kind of hope, but there is nothing, this disease is terrible. I'm not good st this kind of stuff, but I'm really his only good friend. Anything you guys can think of to help me try and comfort him would be appreciated. He is a Christian, so I am able to comfort him from that aspect, but that's all I can come up with.

[Gallowmere]

I’ll definitely be following this for the replies. Empathy and sympathy have never been my strong suits (though interestingly, my girlfriend tells me that it’s coming to me more and more since starting TRT almost a year ago), so I can definitely relate to the intent here.

[Obs]

Tarzan I dont hardly know what can be done that you arent already doing. I recently got a sharp wake up call about appreciating things I have in my life.

Even someone or something that annoys you can actually turn out to be the thing that kept you sane when its gone.

Just being there...
Thats all.
Supportive.

My aunt died at 49. No kids, I was the closest thing she ever had to a son. She had a wild life and was on drugs for most of it. She died in her home and I was the only one holding her hand. Most family had abandoned her after her actions over the course of her life.

I could feel the life slipping away over hours but right up to the last breath she kept regripping my hand. She knew I was there till the end.

Sometimes thats all we can do. It takes a heavy toll too. Sometimes I think I have forgotten how to feel, but thats bull. I honestly think the more of this kind of thing I go through the more I feel and the more I understand feelings and can put myself in others shoes.

My father and I are much alike when things are bad or things are stressful we turn it off until everyone else is ok. It gets hard having to be the rock everyone pulls themselves up on to keep their head above water and you can't be that rock forever. I recommend just being their with them and living in the moment. Don't hide your feelings from them because being that rock is unsustainable. Being there and being real up to the end is the most anyone can give.

[guitarzan]

Tarzan I dont hardly know what can be done that you arent already doing. I recently got a sharp wake up call about appreciating things I have in my life.

Even someone or something that annoys you can actually turn out to be the thing that kept you sane when its gone.

Just being there...
Thats all.
Supportive.

My aunt died at 49. No kids, I was the closest thing she ever had to a son. She had a wild life and was on drugs for most of it. She died in her home and I was the only one holding her hand. Most family had abandoned her after her actions over the course of her life.

I could feel the life slipping away over hours but right up to the last breath she kept regripping my hand. She knew I was there till the end.

Sometimes thats all we can do. It takes a heavy toll too. Sometimes I think I have forgotten how to feel, but thats bull. I honestly think the more of this kind of thing I go through the more I feel and the more I understand feelings and can put myself in others shoes.

My father and I are much alike when things are bad or things are stressful we turn it off until everyone else is ok. It gets hard having to be the rock everyone pulls themselves up on to keep their head above water and you can't be that rock forever. I recommend just being their with them and living in the moment. Don't hide your feelings from them because being that rock is unsustainable. Being there and being real up to the end is the most anyone can give.

Thanks man. That's awesome you were there for your aunt, I cant imagine how much that ment to her

[Obs]

Thanks man. That's awesome you were there for your aunt, I cant imagine how much that ment to her

You recently had this happen with your dad xdidnt you?

[guitarzan]

You recently had this happen with your dad xdidnt you?

Yep, he spent 3 months in hospital, then passed. My father in law/buddy put a .357 hollow point through his brain almost two years ago. Had several friends commit suicide over last couple years

[balance]

Guitar

I’m really sorry. I read this right after you posted it but couldn’t reply as I really didn’t know what or how to say. After reading what Obs said that’s really the best response I feel possible. Being the rock is not always sustainable, just do what you feel at the time as it will be truly you and that in and of itself is the right thing.

[Old Duffer]

Being there. Biggest thing ever

2nd is distraction. Time moves so slow in these circumstances.

Music! Whatever he likes. I've played in hospice situations before

Pet therapy, if he's into animals.

Once the finish line is in view, it's all about being pain free n pleasantly distracted

Wifee n I send our prayers. To him. And you.

[Proximal]

Nothing tops what was said above. Being there and genuine empathy.

It might be too close, but I will ask a friend who recently lost her husband to ALS, for some specifics.

[guitarzan]

Thanks guys, I know there's no easy answers, but yall have offered good advise. It sucks he lives 5 1/2 hours away, that makes it even harder. I do appreciate the prayers for him, I think that's his only hope

[Mooseman33]

just be there and give him love brother.

you sir are a stand up guy.

so sorry to read this man.

[Obs]

Yep, he spent 3 months in hospital, then passed. My father in law/buddy put a .357 hollow point through his brain almost two years ago. Had several friends commit suicide over last couple years

I am sorry for your losses man. Thats the hardest stuff a guy can go through. We will meet again though.

[guitarzan]

I am sorry for your losses man. Thats the hardest stuff a guy can go through. We will meet again though.

That's right. Until then, I'm gonna give life life all I got, my ass is gonna enjoy it while I'm here! Of course, I always have...lol

[guitarzan]

just be there and give him love brother.

you sir are a stand up guy.

so sorry to read this man.

Thanks man, that means alot

[Obs]

That's right. Until then, I'm gonna give life life all I got, my ass is gonna enjoy it while I'm here! Of course, I always have...lol

Just got done trying to superimpose this song over video clips of my buddy I lost. Cant find an mp3 dowload to do it.

When we lose one it takes some of us too but should leave us with a deeper appreciation for what we have and those still with us.

[MuscleScience]

My Lady’s Mom has advanced ALS. There are a number of organizations such as the ALS and MD foundation that ave “loaner,” closet for different equipment and other items. Such as electric wheel chairs, portable toilets, lift etc.

[guitarzan]

My Lady’s Mom has advanced ALS. There are a number of organizations such as the ALS and MD foundation that ave “loaner,” closet for different equipment and other items. Such as electric wheel chairs, portable toilets, lift etc.

Thanks man, I'll pass that along. So many things like this you dont know, or even think about existing.

[guitarzan]

Just got done trying to superimpose this song over video clips of my buddy I lost. Cant find an mp3 dowload to do it.

When we lose one it takes some of us too but should leave us with a deeper appreciation for what we have and those still with us.

You are correct

[MuscleScience]

Thanks man, I'll pass that along. So many things like this you dont know, or even think about existing.

Secondly, there is a lot of financial help too. Again it’s stuff you have to know about. These organizations are bursting at the seems with grant money to help. It’s not that they aren’t upfront about things it’s that they are mostly overwhelmed. They best thing is to have a family or friend that’s a bit separated from the situation that can ask questions without emotional breakdown. It’s very hard to see. I’ve watched it for a year and how it’s aged my girlfriend. (Soon to be fiancé, shortly)

Another thing is to start prepping his house to be wheel chair accessible now. Especially to the bathroom. Get a raised toilet, hand rails and such so he can still have some measure of independence. I can’t understate how important that is to someone with ALS. Just being able to go to the bathroom by yourself can help keep his mental state good, for a good while.

For showering, get something called the “Tub Buddy,” it latches onto the side of the tub and allows him to slide in and out of the tub without much help. Later as he becomes less mobile. It will help his caregivers for a very long time. I could go on and on, I may do a write up on this if I can get some time.

We are both smack dab in the middle of it all and still figuring it out ourselves. There is a thousand little things that can make a big difference.

I would say, spend as much time as you can with him. Get involved and know others in your community that have already been through it. There is one lady here locally who has been a tremendous source of knowledge and helped us with everything from figuring out a toilet beady (sp) to simple wheel chair hacks and grant monies.

[guitarzan]

Secondly, there is a lot of financial help too. Again it’s stuff you have to know about. These organizations are bursting at the seems with grant money to help. It’s not that they aren’t upfront about things it’s that they are mostly overwhelmed. They best thing is to have a family or friend that’s a bit separated from the situation that can ask questions without emotional breakdown. It’s very hard to see. I’ve watched it for a year and how it’s aged my girlfriend. (Soon to be fiancé, shortly)

Another thing is to start prepping his house to be wheel chair accessible now. Especially to the bathroom. Get a raised toilet, hand rails and such so he can still have some measure of independence. I can’t understate how important that is to someone with ALS. Just being able to go to the bathroom by yourself can help keep his mental state good, for a good while.

For showering, get something called the “Tub Buddy,” it latches onto the side of the tub and allows him to slide in and out of the tub without much help. Later as he becomes less mobile. It will help his caregivers for a very long time. I could go on and on, I may do a write up on this if I can get some time.

We are both smack dab in the middle of it all and still figuring it out ourselves. There is a thousand little things that can make a big difference.

I would say, spend as much time as you can with him. Get involved and know others in your community that have already been through it. There is one lady here locally who has been a tremendous source of knowledge and helped us with everything from figuring out a toilet beady (sp) to simple wheel chair hacks and grant monies.

Thanks man, this very helpful. He lives over 5 hrs away, so my time with him will be limited. Maybe I can help him with researching and making phone calls like you said. I will definitely reach out to you for help in the future. Thanks bro

[MuscleScience]

Thanks man, this very helpful. He lives over 5 hrs away, so my time with him will be limited. Maybe I can help him with researching and making phone calls like you said. I will definitely reach out to you for help in the future. Thanks bro

Whatever you need brother, I’m here for you.

[guitarzan]

My friend and his daughter came up to deer hunt and visit this weekend. While walking through the woods he fell and broke his tibia and fibula in his right leg, right above his ankle. This was not what he needed, he is struggling greatly to get around with crutches. Damn it sucks see him like this, but he is in good spirits, considering

[Obs]

My friend and his daughter came up to deer hunt and visit this weekend. While walking through the woods he fell and broke his tibia and fibula in his right leg, right above his ankle. This was not what he needed, he is struggling greatly to get around with crutches. Damn it sucks see him like this, but he is in good spirits, considering

Thats terrible man but at least he is still doing what he enjoys.

[guitarzan]

Thats terrible man but at least he is still doing what he enjoys.

Yep, he said he's going skydiving next!

[Proximal]

My friend and his daughter came up to deer hunt and visit this weekend. While walking through the woods he fell and broke his tibia and fibula in his right leg, right above his ankle. This was not what he needed, he is struggling greatly to get around with crutches. Damn it sucks see him like this, but he is in good spirits, considering

What he’ll remember every time he looks at the cast is the fact that he was out deer hunting; and with a very good friend.