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  1. Barbie

    Today has been a Bad Day

    My poor husband has had a very bad day today-- He has been having daily severe coughing fits in the evening for the last couple of weeks. tons of phlem and he is left feeling weak and spent but feels fine the next morning. the only thing he will take is benedryl because he is sure he is...
  2. T

    Very strange symptoms which may have left to Bulbar ALS

    First, thank you for reading this post and your help. My heart goes out to all that have been diagnosed with this horrible disease. I have read some posts trying to become knowledgable about ALS and I am amazed at the level of strength, courage, and support in this community. I have a very...
  3. T

    My story of the Diaphragm Pacing System Implant

    I had the Diaphragm Pacing System (DPS) implanted on Wednesday April 11 and I thought I would share my experiences here for those who are interested. While researching for my own decision I soaked up everything I could find here and elsewhere on Al Gore's invention but I still wished there was...
  4. LizT

    Oxygen weaning for someone with ALS

    Does anyone know if its possible to wean someone off of oxygen after theyve been on it for years? When my PALS got his trach and later went on his vent, his pulmo automatically put him on oxygen (dumb). I know of other folks who have been on a vent for alot longer than him that dont use oxygen...
  5. P

    More advice

    Hi there all I have posted before and to be fair reading back on my post I think i did sound like a lunatic ( as I was very nicely told by a number of you on here), but here I am again probably being even more a lunatic and I know that as I write this it is probably anxiety but I just cant stop...
  6. Phil's wife

    nurse says could be last days

    Phil began running a low grade temp Sunday night, his breathing changed to labored and his O2 stats began to go down. Earlier that night he was alert and showing his great personality in conversation. His speech deteriorated completely (from mostly only me being able to understand him to no...
  7. S

    Serious Question

    What are the odds/statistics/chances of a 32 year old getting or developing either one of these:- RESPIRATORY ONSET MND BULBAR ONSET MND Asking on behalf of someone who is worried about their health at the moment. According to them they have the following problems:- *Dry Mouth/Lips...
  8. K

    Just Diagnosed

    Well, I had a dr. appt. on Tue after I had some very nice members tell me I should get that 3rd opinion and just forget the insurance part...otherwise I wouldn't have been able to get in so quick! :) At 23 years old, almost 24...my b-day is in 2 weeks....I have been diagnosed by a 3rd dr. as...
  9. trfogey

    Why so little research interest from forum users?

    Dr. Googlitta posted the following quoted material on another thread in response to a suggestion made by me to him that explaining things in layman's terms was a better approach to getting his points across to the members of this forum than the scientific jargon he usually uses to make his...
  10. ccjjcc

    Vent problems driving us crazy

    Hi, so my brother is back in the nursing home from the hospital. I thought it was going fairly well except now he feels "congested". The RT who has 24 years experience said that it's normal to feel like you can't get a deep breath, that it's the muscles that are weak and cause that sensation...
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