bipap 24/7

To say that my dear sweet husband Shane Grant passed away September 8th. He was 52 years of age. I want to say thankyou to those people we corresponded with and also thankyou to the administrators for making this site available. We felt so isolated and simply just being able to log in and...

Hi, I know that the answer is usually enough to make you comfortable but I wonder how we compare? Last year the nurse said Shane was so ill he only had weeks to live and we were using morphine every 4 hours (he refused syringe driver). Soon we were up to 5 mils a time through the intima ( so...

Hello everyone, I signed up here after my husband was diagnosed in March of 09 but I have never posted before. He is 32 and can only move his head a little and can blink, smile and mouth some words. He uses a dynavox to communicate. He spends most of his time in bed because his power chair is...

My husband had his ALS clinic visit today and the respiratory therapist told us she has treated two patients that were on their bipap for over 13 years. George is on his bipap 24/7. His FVC's were 18% today. We both found that very encouraging, as his bipap is meeting all his breathing needs...

My mom is 68 and was dignosed with ALS in October 2006. She is very bad now and I think very close to the end. I moved back from CA to WI to be with her, and although she has 24 hour care, I am here, being a caretaker, at her house, 6-8 hours a day. In addition I manage all of the household...

I have been an ALS patient for four years now on bipap 24/7 and have started experiencing an awful "metallic" taste and a burning sensation in my nose, lips, mouth, eyes and lungs. Has anyone else with a similar problem found anything that could help? thanks ellen