Hubby took two - yes two - riluzole tablets last month and had such a severe reaction to it that he couldn't take any more. He seems to be having such a bad time of things.... So sad watching him getting worse. I think what the riluzole actually did was to give us a glimpse into the future with his MND. He was in such a state I wrote down everything he went through in case he decided to take any in future. We have a sleep & ventilation visit in about 10 days so let's hope they can help him and his getting up / walking is getting so bad that he has had a couple of falls in the last week. Each time it takes a long time to get him up again and into a chair. He is so frightened now to get up and walk anywhere. We are expecting OT & Physio to visit soon - they've not been for a while. I also think his eating is getting worse with choking fits and a persistent tickle in his throat, so we have a dietician visiting tomorrow to discuss PEG. It is all a little much at the moment and I only seem to post on here when I find it difficult. Sorry....! I seem to be helping him with more and more tasks and am not sure how much more I will be able to help him with. I don't mind doing anything at all, just that he is 6'2" and I am only 5'5" and although he has lost a lot of weight, he is still heavy for me. He spends most of his time in tears. I feel so useless as I don't know what our options are. We were advised last week to get a wet room, but I am not sure that by the time we have it all sorted that it will be any use. We had a step built outside the front door for him to go out and that is where his last fall was - it seems more of a liability than a help. He is so frightened now.

Sorry, just wanted to let off a little steam. My heart breaks for him.

Wailywoo xx