Search results for query: *

  1. Bestfriends14

    Wayne Thomas

    Wayne passed unexpectedly this morning. He had some air hunger since yesterday, but in the evening, he deteriorated rapidly. By this morning, he was barely conscious, so we made the decision to give some fentanyl and an anti-anxiety med. Once the drugs took effect, I took the bipap mask off...
  2. Bestfriends14

    Is this the end?

    Wayne is in the hospital for the third time in two months, with a fourth pneumonia. This time, however, he is unable to clear mucous and has battled with dropping O2 sats whenever he does the cough assist. Further, he is unable to be off his mask and needs to sleep sitting up. He's been in the...
  3. Bestfriends14

    Covid Pneumonia

    Wayne is in ICU with Covid pneumonia and a UTI. We are currently in California with insurance, but I'm sure the insurance company will find a way to blame it on ALS and not covid. I'm petrified at losing my love, and being left destitute due to the medical bills. I'm sick to my stomach. We only...
  4. Bestfriends14

    Choking on mucous

    Hello all, My hubby and I are down in the U.S. from Canada, until the 6th of January. However, yesterday was a frightening day where first thing in the morning, my pALS started choking on mucous. It lasted for 6 hours and we needed his nose pillows on while we used the cough assist and the sip...
  5. Bestfriends14

    Is there a liquid version of Mucinex?

    Does anyone have any idea if there is a liquid version of Mucinex? My husband is having trouble swallowing Mucinex pills now because they are so huge. Mucinex cannot be broken or crushed, so we need to look for alternatives.
  6. Bestfriends14

    AMX0035

    I have 3 months of the above because my husband couldn't deal with the side effects. That's too bad as now I have the meds sitting in my house collecting dust. How unfortunate.
  7. Bestfriends14

    Anyone else on AMX0035?

    Is anyone else taking AMX0035? If so, have you noticed any slowing of your progression? Also, what were your side effects and how long did they last? My husband has been on it only a few days, but his side effects are increased mucous shorty after taking ithe drink, lack of appetite, nausea, and...
  8. Bestfriends14

    What now?

    My hubby was told it's too late for him to get a feeding tube; his breathing is too poorly at this stage. So, then, what now for him? Does he get MAID? Get pneumonia and pass that way? Is it more kind to not have one more thing that is the difference between life and death? When my hubby was...
  9. Bestfriends14

    Sore bum

    Happy 2022, everyone. I've looked on the forums and found nothing specific to my husband's issue. His bum is sore all. the. time. He has a Roho cushion, properly set up for his body weight and size, and he cannot sit in his wheelchair for more than a couple of hours. As well, he gets incredibly...
  10. Bestfriends14

    Bulbar?

    I feel like this is a bit of a CIHALS question so I apologise in advance. We went to the clinic on the 22nd and, to our surprise, we learned that Wayne's SVC had not changed in a year. However, because this disease is cruel and wants those living with it to be sapped of all joy, the...
Back
Top