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  1. S

    Tudca/sodium Phenylbutyrate in Oz

    Is anyone home compounding tudca/sodium Phenylbutyrate in Australia?
  2. S

    Simon Patrick Marley

    My brother, Simon, the very best of fathers, sons, husbands, brothers and friends passed away this morning, leaving us all bereft and brokenhearted. I’m so grateful for the support and guidance I found here, and thank you all. Thank you especially, Laurie, for your help over the last week or...
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    BIPAP adjustment

    Our PALS is now almost completely dependent on the BIPAP, although he does take the machine off to have very minimal conversations or to state things. The mouthpiece ventilation, or sip and puff function on the BIPAP machine (the respiratory physiotherapist hadn’t heard of this function of the...
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    Exercising respiratory muscles for a short period

    Sorry, I think this has been canvased before, but our PALS’ respiratory physiotherapist has suggested exercising respiratory muscles off the BIPAP is good, as long as for every hour off the breather, he is ON the breather for 15 minutes. Do those proportions sound right, in general? His...
  5. S

    Cough assist

    Our PALS had a difficult day today, having to use the cough assist machine frequently. This provided some, but not satisfactory relief. I wondered if the cough assist machine has a “prescription”, like the Bipap? Can it be adjusted if it doesn’t quite clear the cough? Can the respiratory people...
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    Trach news item

    Last night, on one of our commercial TV networks, there was a news item about a 52 year old woman with MND, Gabe Watkin, who, with the support of her family, wants to have a tracheostomy performed. The request has been knocked back by the health service where she lives in Queensland. It...
  7. S

    Tracheotomy recovery time

    I’ve read somewhere that the recovery time for a tracheotomy with ventilation is 4-5 months in hospital, and that within a month you could lose the function you do have (if your breathing is the first thing affected), because of inactivity. Does this sound right?
  8. S

    Avoiding falls

    I’ve read everywhere that you should avoid falls as a PALS, and it makes absolute sense. But why specifically is that?
  9. S

    Model Talker files missing

    Our PALS has logged in to Model Talker but all his recordings seem to be missing! Does anyone know if they delete them if they haven’t been used?!! 🙏
  10. S

    Trach timing

    I didn't want to hitch on to Kristina's thread, but this is a similar inquiry. My PALS relative would like to go down the trach/vent route, but is not being encouraged by his clinical team or partner. He is respiratory onset. From Kristina's thread, can I gather that you can go through a...
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