1. M

    Reflux or what?

    The last week or so my PALS would have some coughing after finishing a gravity tube feeding. It seemed as if some formula was coming up by reflux and causing him to cough. It was brief and would resolve. I made sure he was at 45 degrees at least while receiving a feeding and for 45 minutes...
  2. L

    strange sympthoms with ALS

    Hi everyone, I truly hope all the best to all of you and families. First sorry for my bad English I have the beginning symptoms of ALS about 6 months before , and diagnosed with ALS 1 months ago by EMG when I visited my neurologist (UMN and LMN he said). My scores ALSFRS-R is 46, only right...
  3. C

    Touching Base

    It's been 5 and a half weeks since Mom passed and it has been such a whirlwind, but I've been thinking about the folks here with such gratitude. (I've typed five summaries of these last weeks and keep deleting them. Suffice it to say that they've been busy and good and sad and maybe I'm...
  4. J

    Update to previous post - EMG outcome

    Hi - I posted on here a couple of months back, but the post is now locked, otherwise I'd have added this reply. I've finally had my EMG, but need to wait 2 weeks to discuss the outcome with the neurologist. I have attached the EMG readings(?) which show a lot of 0's, 'N''s and 'fasc' against 3...
  5. D

    NP001 updates?

    Just wondering how others are doing in the study. Hubby just had his 3rd infusion. His energy spiked afterward and lasts most of the month but it hasn't stopped his progression at all. I actually feel like it's sped up a bit since he started the trial.
  6. dkcarl62

    Air going down the wrong pipe?

    I hope you can help me understand what's happening to me. I can't even explain it very well. I get these episodes where it seems like I'm swallowing air and liquid at the same time. There is a period of about 15 seconds where I can't breathe and I make this really weird sound when I struggle...
  7. SyncOrSwym

    Riluzole pill -- empty stomach -- protein shake?

    Silly question here: As I understand it, I'm supposed to take this pill when I have an empty stomach for at least two hours and to not eat afterward for at least an hour. OK, but does empty stomach refer to just solid food? Or does a protein shake also count? I'm trying to have a daily shake...
  8. J

    New PEG Question

    Hi, My husband just had his tube placed on Monday so this is new to us. Is it common for contents to stay in the tube? He seems to think that in hospital when they gave him a feeding the tube was clear. But now that we're home and I give him a feeding the tube is not empty afterward. Is...
  9. N

    ramblings afterward ... Toby's gone

    It’s been two weeks since my husband Toby's, battle with ALS ended on June 2, in the afternoon with a respiratory therapist, RN, Chaplin, Social Worker, various other team members from Hospice, his three grown sons, my sister, and our main caretaker Kay all in attendance in our home - where he...
  10. C

    suggestions, ideas, advice would be welcome

    I find myself looking for others looking who might be going through similar experiences. Thank you for letting me come here and share! Any suggestions, hearing ideas, advice is more than welcome. I am only 9 months into this and we are not sure what the "this" is yet. But I find myself...