Hurting for our friend

[DigPlantWeed]

Our longtime friend was diagnosed with ALS in August 2012 (more than three years already!). Initially, they said LMD but then changed it to ALS. He had a bad fall with head injury a little over a year ago (subdural and subarachnoid bleeds). His arms and legs are virtually useless now. But he has a hugely positive attitude. The services and equipment from the VA have been a really blessing for them.

Up until a few months ago, his wife (friend since third grade) told me his respiratory numbers had not changed since his diagnosis. From what she said, that is key in longevity?(He's had a bipap for a couple of years, but I don't know if he has a cough-assist).

Well, two nights ago he went to the hospital by ambulance and is now in an ICU with bad pneumonia and is on oxygen and heavy IV antibiotics. He felt better as soon as they put him on O2, but his wife says he can only say a few words at a time without getting breathless. He is very tired.

We are checking email and FB frequently for updates and feel so impotent being 1500 miles away. If we were there, we'd probably still feel impotent, but we could at least help at home with groceries/cooking/errands or something.

Thanks for letting me vent.

 

[Nikki J]

I am sorry about your friend. Distance is hard but as long as you let them know you care that is the most important thing Depending on what happens next and the other family that they have right there it may be that you can something helpful like send a meal to the house but right now thinking of you and holding your virtual hand means a lot

 

[JimInVA]

We are sending good thoughts the way of your friend. You are right... it does feel pretty helpless to know you can do little more than care and hope for the best. But that is exactly what our ALS friends and spouses want from us... knowing that we care and hope for the best. As such, you are doing exactly as you should. Thanks for letting us know so that we can care and hope with you...

Jim & Darcey

 

[lgelb]

Sorry to hear about your friend and thank you for being a good one to him. I don't know what his ICU permits, but possibly you could say a few words of encouragement to him via Skype...send him a card w/ photos that his wife can hold up...send or link to some music she could play, or an audiobook he might like. Just things to remind him you care and help him rest.

And, as Nikki says, supporting his wife is always appreciated.

Best,
Laurie

 

[Green Queen]

DPW I really feel for you. It's very hard being far away in person, it does sound though you are there in spirit.

Friends of mine think they don't do much to help, but just knowing they are there when I need to vent or cry, or ask for anything at all can be enough.

The feeling of not being alone through out this is extremely important.

I'm sure your friend is in capable hands. All the best to him.

God bless, Janelle x