dad

  1. L

    My Dad Died April 9th

    It has been such a busy time and I hadn't had a chance to post earlier. He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He...
    • LeslieR
    • Thread
    • avaps brother catheter dad diagnosed diagnosis dying early eyes father feeding feeding tube grace hospice life morphine music night nutrition oil pain pneumonia speech story tracheostomy trilogy ventilator
    • Replies: 12
    • Forum: In memory of
  2. O

    Eye Tracking for Computer Use

    I wanted to share some exciting news... My dad had been using a Head Mouse until he could no longer move his head, about two months ago. There are plenty of expensive options for "eye tracking" - but I found a $150 device on Amazon called Tobii Eye Tracker 4C. It's designed for gaming, but...
  3. K

    Cough Assist T70 - Like new

    CoughAssist T70, 110V - includes SD Card, Hose Clip, Air Filter, 6 Foot Patient Circuit, Adult Large Mask, AC Power Cord and Carry Case. Bought it in Feb 2015 from VitalityMedical for $3900, for my dad. Tried it exactly 3 times. He never liked it and we didn't ask him again. Now he doesn't need...
  4. K

    Research Study

    I lost my Dad, Jeff Long (who was active on this site), in October of 2015 to ALS. I am currently looking at the Infant Feeding Characteristics of Patients with ALS with the University of North Carolina at Chapel Hill. The information is listed on the National ALS Registry website...
    • karsey
    • Thread
    • als als registry carolina cdc dad feeding information never give up research survey website
    • Replies: 2
    • Forum: People with ALS (PALS)
  5. K

    Still Looking for Canadians interested in Sharing their Experiences

    Hi there! My dad was diagnosed with ALS in 2016. His struggles with the Canadian Healthcare system have motivated me to do something to create change. So that he and others might be better cared for and supported. If you are a Canadian that has been diagnosed with ALS or a related condition...
  6. C

    Realization

    What does it mean to realize something that has been sitting right in front of you?? I had a dream last night about my dad. I have dreamt about him in the past but not to this extent. In my dream we were doing all of the things that we used to do. However, at the end of the dream he fell. I...
  7. E

    Dad's Symptoms after Parkinson's Misdiagnosis

    Hello, I am going to share with you my father's current symptoms. I am a bit worried about him and would like to know your opinions My dad was diagnosed with Parkinson's disease and treated with levodopa for 3 months. Since the drug was not very effective, they did a neural imagining test and...
    • Emanol
    • Thread
    • als balance bed clinical dad diagnosed emg fasciculations father foot ideas lyme lyme disease misdiagnosis muscles pain problems speech symptom symptoms test twitching weakness worried
    • Replies: 22
    • Forum: Could this be ALS?
  8. M

    Stem cell transplants

    My Dad who is 60 an active and daily exercise this entire life was just diagnosed with ALS last week. We are totally devasted and feel completely overwhelmed at the task of trying to slow or better yet stop the progression of this disease. He has 4 children, a wife, 3 young grandchildren that...
    • Meghan98ray
    • Thread
    • als cell children cure dad diagnosed exercise friend life progression stem cell travel work young
    • Replies: 5
    • Forum: Newly diagnosed
  9. L

    Dad is actively dying

    Hi everyone, my Dad is now actively dying. He started rapidly deteriorating over the weekend. He couldn't inhale well and was gasping for air. He stopped tolerating his tube feedings and were increasing is morphine and Ativan doses everyday. On Monday the hospice determined that he was eligible...
  10. S

    Bulbar ALS?

    Alright so about two months ago I opened a post stating that my speech/sudden lisp has been bothering me. (I couldnt figure out how to re-open the thread so im sorry for posting twice) And honestly it has gotten worse, many s and z’s now come out as a whistle and i have to talk slower to make...
    • SNicole
    • Thread
    • als als? back bulbar bulbar als cold dad emg family female frustrated ice speech tongue twitch
    • Replies: 10
    • Forum: Could this be ALS?
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