Recent content by mrsharris

  1. M

    Question about NIPPV machine

    I think its called a NIPPY at least that's the name that's printed on it and his wheelchair is (very inapproriatly) named "Karma" (ffs! who thought that was a good idea!)... its a 6 wheel power chair that tilts backwards there would be room to hang the machine on the back in a bag but then he...
  2. M

    Question about NIPPV machine

    My dad has respiratory onset ALS diagnosed in May 2017, he still has full use of his hands and his speech and swallow are only minimally affected but he is really really weak can only walk assisted for 2 or 3 steps so he has a power wheelchair for getting around. At first he would only need...
  3. M

    What to expect during late stages?

    my dad has ALS and also presented with respiratory onset. (drastic weight loss and foot drop were his initial symptoms and he was diagnosed in May 2017). He lives at home with my mam as his primary carer and that's where he will remain. my brother and i take turns to look after him 2 days a...
  4. M

    Link with OCD and ALS??

    My dad was diagnosed with ALS a year ago, he has respiratory onset. Although he uses a NIPPV up to 20 hours a day and needs a motorised wheelchair for anything longer than a few steps he's actually doing ok considering the prognosis last year, a year later he still can eat and drink what he...
  5. M

    Respiratory Onset- Update

    my dad was diagnosed with als last May initially they thought it was bulbar onset as he had some minimal bulbar issues but the bulbar weakness has not progressed at all in the last year where his breathing has rapidly deteriorated so now they believe it is respiratory onset. We have found the...