Recent content by Samkl

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    Raising the white flag

    Bless you both xx
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    PEG tube for respiratory onset

    No, it hasn’t been offered. He believes there’s a sense of “what’s the point” because he is respiratory onset, and that’s the start of the end point in ALS. He’s 12 months in to a 2 year prognosis. He uses His BIPAP overnight, and Sometimes during the day for a rest. I’ve said for months and...
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    PEG tube for respiratory onset

    Would anyone not recommend a PEG for a respiratory onset PALS? My brother was first diagnosed in August 2019, and seems to be progressing reasonably slowly from what j can gather. No one, neither his doctor nor his partner, has encouraged him to get a tube, even though weight loss and eating...
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    Ace broke his leg.

    Our little girl pup lost her brother, her sight and her hearing at the beginning of the year, but she’s fine - she seemed to have no investment in the past or the future, just a happy now. So don’t worry about Ace - our canine darlings are expert at living in the moment, for which I am jealous...
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    Riluzole

    Don’t let me start, Tillie......
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    Riluzole

    No, he wanted to go on Riluzole. He is on the cu(II)atsm trial, and his last dose is around 26 July. He continually asked about Riluzole but there was a muck around with one of the doctors on holidays or something, so some results didn’t come back early enough to start and establish the dose...
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    Riluzole

    Thanks Nikki, for posting this. My brother isn’t on Riluzole because of the start date of the trial he is on (which then started late anyway !). He has been told it’s not a game changer (which I posted here), but I have always thought he should definitely be on it, and will forward this link to...
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    Pain and more pain

    I’m so sorry, Kim
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    Voice banking and model talker

    She has suggested once you get an orange light move on, don’t go over and over trying to perfect a sentence. But I will ask him to check with her re other programs that may be better suited to an Aussie accent. Thanks Nikki and Laurie.
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    Voice banking and model talker

    Thanks Nikki. He is being directed by the speech pathologist who is part of the multi disciplinary ALS team. I suppose if there was an Australian program they would have steered him that way.
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    Voice banking and model talker

    Thanks for that. What do you mean by AT?
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    Voice banking and model talker

    My brother has started the process of voice banking, but the model talker program doesn’t seem to like the Australian accent. He has to keep repeating over and over again each sentence to get the orange approval light (much less the green approval light!). Has anybody had this issue?
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    Neudexta Update

    That’s a seriously gorgeous bub!
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    CBD Oil

    In what way do you notice it, Kim, if you don't mind me asking? S x
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    Cost of meds in the US

    In watching the Democratic Presidential race from afar, I must say it’s astonishing to see “Medicare for all” framed by Republicans, and maybe some Democrats, as “socialist”. Perhaps it is, but the right side of politics tends to conflate “socialist” and “communist”. We always remind our...
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