1. S

    An intoduction myself

    Hi Everyone, my name is Juri. I have been living with ALS for 12 years now, and I had been gone from this site for about ten years, and during that period of time my FRS dropped from 23 to 1. I am on vent 24/7 (with the use of tracheotomy), I use an eye gaze computer for communication, and I...
  2. kitkat


    My PALS finally received his PWC a couple weeks ago. He should have received it almost a year ago, but miscommunications & ball dropping happened. It is set up with a head array so he can drive it, and a joystick in the back so I can drive it. Unfortunately, his neck has gotten so weak, he is...
  3. D

    Very low FVC

    How long can one survive with an FvC below 20%? (And no vent)
  4. T

    The Lonely Burden of Not Dumping In.

    Hello Everyone: This is how I basically handle most crisis in my life: How not to say the wrong thing - latimes The gist is, draw a small circle and write the person at the center of the current crisis in the center ring, then draw another ring and write the names of the people most affected...
  5. A


    Having a difficult day. More progression and the grief that goes with every loss is hard to deal with. I know I m depressed but I m still handling everything. My pals depends on me and I want to be strong for him, and be the caregiver he deserves. I m frightened and overwhelmed, it is all...
  6. Nuts

    1 Month Warning...

    1 Month Warning. That's what I just gave the family, via the private family FB page. One month of no quality, coherent time with Matt and we will be taking him off the vent. He was clear headed about a week ago just long enough to tell me that crazy communication doesn't count, so when he's...
  7. G

    Ventilators and Essential Oils?

    My nose is pretty much always stuffy. Whether from allergies or winter, I don't know. I thought of essential oils and got a bottle containing a mix of 5 oils supposedly good for clearing sinuses. But as I'm on a Trilogy 24/7, NIV, how best to use them? I had my wife stuff a bit of paper...
  8. Kristina1

    disagreement with my husband/cals about end of life decisions

    This is mainly a vent.. We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions. While talking about this I told my husband when the time comes I DO want a...
  9. lgelb

    David Jayne

    A longtime activist who helped change federal home health requirements, David opted to be weaned from the vent in June.
  10. C

    scared and need to vent.

    I have all the symptoms, increasingly bulbar to be specific. I have been in and out of the hospital the past couple of weeks, I have the follow-up appointment with Neuro on Wednesday. The first time he saw me he took ten minutes and then told me it was probably stress. I know why its because I...