1. M

    Hello everyone, I'm here for my mom, who has ALS

    Hi everyone, My mom was diagnosed with ALS on Dec, 2015. on Feb 2, 2016, she fainted & doc's later told us that she now has type 2 respiratory failure. We was not prepared for such quick progression of the illness. She has been operated & now has a tracheostomy tube inside her trachea, with...
  2. P

    PALS in denial

    My PALS was able to eat and drink without difficulty prior to last June when he was hospitalized for bilateral subdural hematomas from multiple falls.( He had a walker but refused to use it.) He had a very stormy hospital course and was hospitalized for 10 weeks and required intubation with...
  3. A

    Cost of nurses

    I am currently taking care of myself during the day, but soon I may not be able to do so and my wife may not be able to take care of me 24 hours a day. I wonder how much is the average cost of a nurse. (I am in California) At first I may need someone without much preparation, but later on, if...
  4. Atsugi

    Life Expectancy and its Variables

    I copied some statements (below) about life expectancy. Here’s what I think I know from the doctors and from helping my wife as she progressed: In ALS, death usually comes from impaired breathing, especially aspiration pneumonia due to swallowing problems. If the patient lives long enough...
  5. D

    Attention California Residents

    To California residents who are on hospice or will need hospice services in the future: Below is the text of a letter I sent to the Director of the California Department of Public Health (CDPH) requesting clarification and enforcement of existing regulations that are being routinely ignored by...
  6. Graybeard

    Condition Update Fell Flat, I Guess

    Here's what I sent to my extended family of two dozen or so, and only one response. Why? ----------------- This was my Jan. 2014 note to you all. Scroll down for the update. Without Good Health …. When it became obvious I was losing a pound a week last year, I joked that I would write a...
  7. H

    End Stages...just got more complicated

    Hi friends, To recap previous information I have posted about my precious brother.... My brother was diagnosed with bulbar ALS in January 2011. He has been on a feeding tube since June 2013, unable to speak since May 2013 and has been on a non invasive ventilator (Trilogy) for about 8...
  8. D

    can someone afford to be put on a vent

    and live at home on a regular income? (tracheostomy) i attend clinic at Hopkins, and their answer was a resounding no. just wondering if anyone has seen or heard different.
  9. F

    Tracheostomy-pro and con

    My wife has always been against her having a tracheostomy. She is 53 years old, Bulbar onset ALS diagnosed three years AFO. The Pulmonologist asked her about her wishes and she said she was no longer sure. She has lost all voice and has minimal right thumb movement along with some head/neck...
  10. H

    Non Invasive Ventilation vs Tracheostomy

    Hi Friends, It has been so very long since I have posted anything, and my brother is now close to 4 years since his diagnosis of bulbar onset ALS. He went from slurring his words, to feeding tube, unable to speak, unable to walk, wheelchair, bipap and for the past 4 months requires the use...