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Dear Friends, I have not logged on since August. My lovely Laurence passed away on 9 November, two days after my birthday. It was a difficult, drawn out death. I rarely speak about it. My son turned 4 on 15 January. He is very much like his dad, in spirit. Physically, he resembles me...

Dear friends, My lovely Laurence is now deeply asleep, following a horrific few days of respiratory distress. I have called in the district nurses and they have started him on a couple of drugs. The idea is to keep him 'comfortable' - we all know what that means. Our son is here in the house...

Dear All, what are your experiences with Mucodyne? We have introduced it lately, due to persistent struggle with mucus plug (basically a killer if not shifted). The result is thinner saliva but too much of it pooling in the mouth, and choking L. He is on 10ml of syrup 3 times per day. Dani

Dear All I don't post much these days, but all are in my thoughts and I read whenever I get a chance. Things are getting even harder for us, but it is warmer and all is green, so life is still worth living. Just wondering who is still here, from the 'old guard'. I joined in 2008.... Dani

This is becoming a problem. Patches? Something else? D

If so, what dose? Any other thoughts on it? Partner been prescribed 5ml via PEG, but I feel dose too high as he sleeps like unconscious. Late stage ALS, very limited function and on NIV 24/7. Dani

Dear All, I have not been very active on this form since Sept last year due to starting a new job, which involves 4 hours of commuting every day and it has been extremely challenging. Laurence pointed out this has actually been good for me, as it has allowed me to move on from various forums...

Just a quick note to say I am around, but have not had time to read or post. My workload will lessen in a couple of weeks, so I will be stopping by. I hope everyone is doing as well as possible. X Dani

I'm writing this on zero sleep. L went into respiratory distress around 1am. Bipap was blowing air which was coming out through his mouth, unable to get to lungs. Alone, I struggled trying different masks on while he turned grey and I thought we were saying goodbye. It was horrific. I got cough...

These days I exist in some form of suspended disbelief that my partner will indeed die. He is on the vent pretty much 24/7, he hasn't got an infection, we have got a routine in place and a set of carers. Damage done by ALS is minimized... However, I know this is the last stage, that he can go...