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Hello friends, Thanks to this forum family I remained sane whilst my pals was living with als. I continue to come here and hope I can contribute something from time to time to pals and cals out there. As some of you know my pals died in June. It seems to me that for cals, part of living with...

My mum's last lap, begun almost two weeks ago, came to an end at lunchtime today. Though she had a very rough time with the effects of infection, the last few days were very peaceful. Today she died very simply, peacefully and without pain. She opened her eyes and simply breathed out her last...

My mother, my trooper, my fighter, is in her last lap with mnd. She is dying as she has lived, throwing everything she's got at it. She is valiant and exhausted but not yet quite done with her battle. See you all again at battles end.

Hi there gang. I'm looking for some help, advice and opinions around bipap. My pals is immobilised except for some head motion with which she can sometimes indicate a yes or no in response to a question. She wishes to die at home and wants no more hospitalisations. I want what she wants and...

Hello forum friends and suction users. I am looking to replace the bubble fit tubing on a SAM 10 suction machine. The main supplier here is not keen to sell to private users and is suggesting a large price and long waiting time. :-(Don't think they've ever had an order that didn't come from a...

This day last week one of our national newspapers carried an article about Simon Fitzmaurice, an Irish film maker and PALS. He battled to be allowed live on a vent. Here's the article: They asked me why would I want to live - The Irish Times - Tue, Apr 12, 2011 I heard him and his wife...

So, today we went to our first specialist als clinic. Arrived for 4pm appointment and finished up at 8.30pm. Very impressive clinic with a prof who really knows her stuff. How I wish we'd met her earlier! Got more info today than almost all our other neuro appointments all put together. So why...

Hello friends. My pals had her clinical review today. She is on hefty doses of amytriptylene to dry up her saliva (bulbar onset) & help with pain. It seems that the elevated doses may be causing confusion & jumbled thought so neuro has suggested trying Glycopyrrolate - Wikipedia, the free...

I’ve seen some old posts on cognitive change, not FTD so much as mild changes in thought processes and concentration. I'm hoping those of you with experience of cognitive changes and communication can help me out. In the early days of my mum's diagnosis her cognitive changes showed up in things...

Yesterday my PALS tried out a switch for her 'say it sam' tablet. She has a buddy button. The large disk like one. We're hoping to make it work but I can see it will need some adaptation. She has some strength left in her index and third finger so this is what she is using for the switch. We...