Michele, Gembread, Aussiemndcarer, - I am sorry to read of your daily struggles and too few triumphs. I feel your frustration, anxiety and pain ..... we are but a few steps behind.... It is so hard to know what to do and what to request (durable medical equipment) as this is, as someone stated "a moving target". I have spent >30 years of my life as a PTA, so I have been a bit lax at getting equipment ordered. I KNOW I can move my husband, as I have lifted/transferred much, much heavier people in my career. My PALS / Dave, now weighs less than me. He continues to lose weight and now his respiratory function has showed signicant decline in the past 5-6 days. Dave was scheduled for a "full pulmonary panel" including blood gases and a lab supervised sleep study for July 29th. Today I called the ALS clinic and told them he may not last until 7/29. He is demonstrating a marked decline in his breathing capacity, both at rest and while sleeping. We have ZERO equipment so far. I called the ALS care liaison nurse today and told her that I almost took Dave to the ED yesterday due to respiratory decline (and voice projection decline). Long story short, we have an appt. tomorrow with pulmonary medicine. I think Dave needs a BiPap or Trilogy NOW!! Hopefully we can move that forward quickly, as he is exhausted all the time and does not sleep well, despite 2 bed wedges and me checking and repositioning him several times per night. I will need to do some reading here and get advice regarding Bipap vs. Trilogy and what Medicare covers, etc. I am williing to buy a used BiPap outright and "save" our option for a Trilogy if need be, but it would only be to utilize the advanced settings (forced inspiratory volume, etc.) of the Trilogy, as Dave does not want to be vented.
Tillie, I read "Tillies Trees" when I get the chance, and I find it interesting and inspirational.
Soonerwife, I am so glad you made the trip to HI and are finding it wonderful and having some fun. We have been to HI many times and at one time Dave wanted us to move there.
Love to you all, and I am glad we get to share here, even if it is to "vent" or to share our sorrows and our small triumphs.