dont' forget to hug and touch them. People are so uncomfortable with this disease. It hurt my brother when someone didn't respond to his touch. Their minds are all there! Dont' forget. Keep calling your friend often and go out and talk. The family is devastated and need people that will care...
All you can do is try and encourage the bipap. But honestly my brother had this restlessness and the hospice nurse said it's when people are nearing the end. Have you considered hospice? Morphine will make her more comfortable and it helps them breath better. That O2 level is very low. I'll pray...
I think my brother might be a rare case but started slowing his speech in late July. By thanksgiving could not talk at all. The following week could not swallow. We lost him Dec 7th. I know every PALS is different but you may not have a lot of time. You just never know. I say go to her now. Pray...
Hi dianan: This is what is called GRIEF! It is hard work. You are angry at the people who don't understand. I lost my brother from ALS 3 weeks ago. I was annoyed that my co workers were in such a good mood for xmas and I just wanted to scream and say I'm hurting! Just pray about it if you are a...
I'd love to send it to you. Just received some more unopened supplies from my sister in law. Send me your email and do you by chance have paypal? It looks like you live in Wisconsin? I got it from a girl in Canada. ALS is all around. Hope they find a cure in my lifetime. My brother was a...
Dear Cree: Very sorry for your loss. My brother lost his battle Sat Dec 7th. He had bulbar onset, first symptom in June and diagnosed in October. Not sure I've ever heard of someone going that quick. God is merciful. We have a strong family support system also and it's so great that your kids...
Hi Wendy: Sorry to hear of this diagnosis. My family didn't know how to handle things so ALS of Michigan told us to ask my brother what he wanted. He said he wanted to always stay at home so we made that happen. Maybe your 2nd daughter could put it that way and then you can say you want to live...
My brother lost his battle this weekend with ALS. He was using Deanna's protocol. A girl named Sam on this forum was giving away her unopened protocol after she lost her boyfriend. I never opened the box and I would like to do the same. I would ask that you cover shipping only. If anyone...
My brother was diagnosed with bulbar als 10/2013 and is deteriorating fast. The last 10 days he is so restless, wants to move every 5 minutes and is falling. Today a trip to ER for stitches. Anyone have experience with Effexor? He needs something. Xanax makes him more restless and he's up all...