tracheotomy

  1. K

    What if he refuses a PEG?

    Mike has refused a PEG or. TRACHEOTOMY. What will that do to his timeline? He was diagnosed in March, he has lost 55 lbs, he is wheelchair bound, and has little mobility left.
  2. J

    Breathing Anxiety

    I have bulbar and was diagnosed 18 months ago at 60. I have no trouble walking or using my arms and have limited use of my hands, but they are still somewhat functional. I can't speak or eat and use a peg. I have been using the trilogy unit at night, but it seems my lungs have recently...
  3. Chumpy

    Tracheotomy and Vent

    My PAL has bulbar onset ALS. He is facing deciding on trach. He has been on NIV for about 8 months and his diaphragm has become weaker, pulmonary Doctor has recommended trach. My PAL wants to make an informed decision. Yes a lot of information on web, but he wants current, straight from other...
  4. Chumpy

    Nuedexta info please

    Any information on this would be great! PAL has Bulbar ALS, but not the laughing and crying. We've heard good things on the bulbar side, but concerns on side effects! Please share your experience with this medicine! Speech is almost gone, swallowing barely, FVC 40% so diaphragm is getting...
  5. K

    I need help

    Hello My father was diagnosed with ALS in 2013. His symptoms were very subtle and started off with thumb numbness. When we tried everything from surgeries to physio-therapies we were still hoping that the numbness had something to do with stiffening of the nerves or muscles. I am from Nepal...
  6. E

    The End

    Hello. I've lurked here on the forum since my mother's initial diagnosis in early January. That initial diagnosis was followed by a confirmation at our local ALS Clinic three weeks later. My mother has had significant health problems since 2002, so while she experienced symptoms for many...
  7. M

    My elderly uncle has been diagnosed with unusual form of ALS, we're puzzled

    Greetings to all and before I go into our situation I want to express my good fortune and gratitude for finding such a valuable resource as this online forum. My 82 year old uncle fell ill and was hospitalized due to a hypofunctioning esophagus. 15 years ago he had ruptured his esophagus due...
  8. C

    Helpless and scared

    My mom was diagnosed with FTD in February of this year and then diagnosed with ALS in September. We were told that it's rare for the FTD to happen first but not unheard of. We started noticing changes about two years ago and after taking her to numerous doctors we were told its FTD. I feel like...
  9. J

    God was this right choice?

    Hello I am just hoping to find some peace in the decision we made My wife had a tracheotomy done two years ago and a feeding tube, She did not want these machines two years ago but I insisted on put that to her. We removed that last week after a conversation I just brought. Now I have a guilty...
  10. J

    Disconnect Vent support and track

    Hello I am just hoping to find some peace in the decision we made My wife had a tracheotomy done two years ago and a feeding tube, She did not want these machines two years ago but I insisted on put that to her. We removed that last week after a conversation I just brought. Now I have a guilty...
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