Recent content by LoveMyBoy

Jim I'm so glad you didn't mean it about feeling guilty about Darcey sleeping through! Very happy that what you're doing is working for you

Welcome Gemma, I'm a fellow Aussie, though not as active here as Tillie! Sorry you had to join us, I found this group a little late in our journey but it's full of great support and advice, Deb

Thank you everyone, I have never had any of that oxygen information explained and as my husband is heading into end-stage it's definitely stuff I need to know. Katrina wish I'd had your more technical explanation of what was happening with the palate collapsing - might have stopped our...

Tillie I just read more posts and saw what's going on for you - ignore my well-meant suggestions that mean you having to do anything else at all! Hugs and hang in there, be kind to yourself, Deb

Hi Tillie, Yes my husband tried low doses of Baclofen earlier, said it didn't do anything and gave up on it. It was only during his respite hospice stay that they had the time to gradually up the dose - also since he's no longer weight bearing less of a concern about weakening muscles more...

Dear Earthling, A big hug from me too. We all know where this journey ends and all we can do is make sure that our loved ones are surrounded with love and are kept as comfortable as can be through that final stage. I am sure that he is sad to leave you, Peace and love to you both, Deb

Sorry about the delayed response - first week home from hospice lots of adjustments to make! Counted 14 people through the house on Tuesday, mostly discussion and no action... Thanks Paulette yes he has done a sleep clinic as well. They've settled on the fasciculation/cramps type explanation...

Hi Paulette, No, it's the respiratory team who weren't ready to give him BiPap yet - my husband is willing to try it. We didn't make it to the respiratory tests - we discovered his wheelchair is no longer well-suited to him as he started sliding out of it despite two seatbelts in the...

Sherry I'm so sorry. I wish I had something really helpful to say. Gathering information is really important - at least means that you have ideas on how to deal with whatever new challenge comes up. Take any and all offers of help (do what I say don't do what I do on this one). I'm a planner...

Did not think of fasciculation connection - gosh I hope not because then he'll have them for a while... The medication side-effects option does seem possible though, they've been trying a lot of new things while he's in the hospice. His last breathing assessment was about six months ago, and...

Hi, This is my first post - have been lurking for some time reading all the great advice. Thank you all for holding this party and allowing others of us to join. My husband's ALS is fairly well progressed - he started with left arm weakness and slurred speech, and at this point has lost the...