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  1. worrieddaughter77

    My dad is still doing well...

    Hi everyone, First of all I would like to thank you all for being such an invaluable community for the newly diagnosed and beyond. I don't know where else is get all of the knowledge about taking care of my dad without you support!!! My dad is still doing well!!! Although he's been...
  2. worrieddaughter77

    My dad is still kicking, but recently got the flu.

    Hello, Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could...
    • worrieddaughter77
    • Thread
    • back bed bipap can't swallow cough assist dad diagnosis flu food muscles nurses nursing homes oxygen pneumonia sad scared support swallow usa worried
    • Replies: 9
    • Forum: Current caregivers
  3. worrieddaughter77

    Have you heard about this research and info on trials?

    I know there are many of you on this forum who are quite knowledgeable about the current research on ALS. Is this something you have already discussed? How promising is it, and has any of you enrolled in the trials...
  4. worrieddaughter77

    beginning of respiratory failure?

    I can't handle it... My dad has been coughing for about 2 weeks now. He starts at about 7pm and it continues on until about 2am. It's so difficult for him and the rest of us to sleep. And I just don't know what to do!!! It seems that the reason for his cough is a partial collapse of his left...
  5. worrieddaughter77

    Some updates and decisions

    My dad is declining very fast. As new changes happening I would like to ask you for an advice/comments on the following points: Fatigue: My dad is very weak. He almost can't walk or stand up from a chair anymore. Taking him to the Dr or clinic is such a draining task on him. Just getting an...
    • worrieddaughter77
    • Thread
    • advice back brother chair clinic communication cough assist dad end of life foot frustrated health heart immediately life meals problem quality of life shower swelling symptoms vent worried worry
    • Replies: 10
    • Forum: General discussion about ALS/MND
  6. worrieddaughter77

    coughing and difficulty breathing

    My dad's coughing returned again. He was doing fine for several months but now he coughs every evening again. It's difficult for him to go to sleep because of it. He doesn't cough in his sleep though. He says coughing is mostly due to accumulating mucus. It accumulates in his throat and...
  7. worrieddaughter77

    The cost of ALS in the long term

    Hello, I would like to figure out what is going to be the financial side of my dad's illness. My dad has a very good PPO insurance in Illinois, and so far all of his treatments were covered ( when they were approved by insurance. The insurance has only rejected his spine MRI once). What should...
  8. worrieddaughter77

    Questions to doctors during second ALS clinic visit.

    My dad has been diagnosed with "MND likely ALS " a month ago in North Western University hospital in Chicago. In 4 days we are going to his second ALS clinic visit. During our last visit, i was too overwhelmed and unprepared to ask questions, but i want to make sure i am all of the important...
    • worrieddaughter77
    • Thread
    • als als clinic brain breathing clinic dad diagnosed drug trials genetic genetic testing mnd myasthenia gravis peg progression questions radicava rilutek stress supplements testing wes
    • Replies: 12
    • Forum: Current caregivers
  9. worrieddaughter77

    How to pick cough assist or suction devices?

    Can you please recommend what brand of cough assist or suction machine to buy for my dad. He complains that his saliva is too thick now, and i don't know where to start. Should we tell this to our dr so that he prescribes one, or is this something that is normally not covered by insurance...
  10. worrieddaughter77

    Vitamins/supplements to slow progression?)

    Hi, in various threads i noticed that some of you swear by vitamin D, or other supplements. Could you please share some that you are taking? Are you taking it per dr prescription, or after doing your own research? Thank you very much! Anna
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