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    ALS never leaves us

    Hello dear friends. I thought that I would send my warmest wishes to you all on this first day of 2018. I have been absent from this forum as I have been trying to get on with living after Jim lost his battle 10 months ago. I'm so glad that 2017 has finished. It truly was my year from hell. I...
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    Flash backs

    Hi, I know it's probably normal,but I have flashbacks to parts of our journey with ALS . Everyday I think back to the decline , the losses and the way We dealt with them. At the time, I just reacted,and then tried the best I could to solve the problem,how to adjust to a new loss .I never really...
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    Trying to grieve

    One month and one day! I'm checking in to say hello and to let you know that this forum is still so very helpful. Since Jim's death I have been surrounded by family and our three sons. I've had wonderful support from so many. But still I cannot leave this journey behind. Jim's funeral was held...
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    Aussie's Jim

    Hello my dear forum friends. It's half an hour until Wednesday here and guess what? I'm early for the first time. My darling man was set free on Saturday afternoon. He just couldn't handle another loss. It was far too hard. I will start another thread next weeks out this as I know that I can't...
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    My pals has had enough!

    It's time! I'm in a state of shock really as here I am sitting beside my man waiting for the dr to arrive to have " the chat". This morning was just all to hard for my man. He can't eat,drink,talk so anyone can understand him and he felt sick as well. He can move just one thumb a bit and maybe a...
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    Pressure sore scare

    Advice from those who sit all day in a chair and then sleep in a recliner please! What do you do to avoid pressure sores? I'm interested in other strategies. I hope someone out there has a plan that works.
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    Take a coffee break with me

    If I could, I would order a coffee ( it would be a long black with a dash of milk) & sit down with a CALS or two and get to know you all a little better. Sometimes I feel as if I'm losing my identity . Once , I worked in our own business, chaired regional development meetings,travelled a lot...
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    Noisy stomach

    This is difficult to describe,but my PALS often has a very noisy stomach. After drinking or eating you can often hear the oesophagus making noises and his stomach is noisy too. It is as if we can hear his body trying to get the food/ drink down. At first we thought that the rumbling stomach may...
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    Keeping straight!

    It started with what many of you have called " the pillow dance" I would have to rearrange the pillows and cushions for my PALS so many times during the evening. Now on an average day we have to line up or should I say " keep straight" so many things. Feet, legs, shower chair,knee rug, warm rug...
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    Interpreting the medical specialists

    Help! In the last week we have had visits by our GP, hospice nurse and palliative care specialist. ( she's head of palliative care in our large regional hospital that is 1 hour away.) We do feel very special that we have so many people helping us! The problem is, all of them finally get around...