1. M

    Should I be concerned?

    Hi everyone - I am seeing my primary care doctor tomorrow but wanted to get your opinion on my situation seeing as you have so much experience in this area. My uncle passed away in Spring 2017 from ALS (he was late 60s) and my dad was just diagnosed with ALS (he is 74). I'm considering getting...
  2. A

    my journey winding down

    now that the end approaches thought I'd share a few things,. This group has provided the best support. My five years have been filled with joy I never thought possible. I give credit to my attitude of not letting this beast get hold of my heart and soul. Also for my determination to follow...
  3. N

    PEG tube > now I can't control my bowels?!

    hello, I have had a feeding tube now for about a week. I am strictly on the formula diet (i haven't tried pureeing Foods yet) and I haven't been able to control my bowels,. Everyday, sometimes twice a day I'm having accidents. Is this how it is going to be from now on? I feel trapped now like I...
  4. 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...
  5. B

    PEG (Feeding system)

    I have now been advised to have a PEG port placed in my stomach since my breathing has taken a turn for the worse. I can still eat and drink, but I was told my FVC was now down to 50% so it's time to do this procedure before my breathing becomes even more compromised. The procedure would be done...
  6. T

    Question about life if a cure is ever found.

    It's been a while since I have checked in. Life for my son and myself, as caregivers, is almost unbearable. My PALS is totally paralyzed from neck down. He has a feeding tube and is on a ventilator. He seems a little more depressed lately. Still doesn't sleep well at night so my son and I...
  7. F

    What to expect during late stages?

    Hello, I made a post a few months ago suspecting my Dad had ALS. Six months ago he was up walking, doing perfectly fine. It has been a steady decline to this point, and we have waded through rehab facilities and hospitals like they were hotels. My Dad was finally transferred to UAB Hospital...
  8. H

    Offered feeding tube supplies & food

    Hello, In Seattle area, we have gravity bags, a couple of Halyard Mic-Key extended tubes (141-12), 4 cases of Nutren 1.5, and 6 cases of Real Foods Blends. Expiration date on Real Foods Blends is 2019..we purchased them just a month ago, and are hoping to find someone who can benefit.
  9. G

    Newly diagnosed

    I was diagnosed by a neurologist about 5 weeks ago after two EMGs and MRIs confirmed his suspicions. I'm not sure how long I've had this as I was in treatment for Lymphoma in 2014 and never fully recovered from Chemotherapy. Now that I have done some research, I think I was passing off some...
  10. M

    My PALS is getting a cold-help!

    My husband seems to be coming down with a cold and I have no idea what to do. This is the first illness he has gotten since diagnosis a year ago. He is on a feeding tube and a bipap at night (12-14 hours). Last time it was tested his breathing was around 50% (don't have raw numbers). He has a...