Recent content by Kristina1

  1. Kristina1


    I agree about FB. Im in several ALS groups there and they are quite active. It's also easier from a phone. I prefer this forum for solid information though. There's a very knowledgeable core group here.
  2. Kristina1

    Hyperbaric chamber

    This is usually a scam treatment. It was also offered as a cure-all in the autism community (it does not cure autism). It's not without risk either. One autistic child died in a HBOT chamber.
  3. Kristina1

    blow my nose?

    Question, will I still be able to blow my nose at the end or will that go with breathing muscles? I notice my cough getting weaker because I have a hard time getting things out when I aspirate, but I can't tell if it's gotten harder to blow nose. You know how when things are gradual you don't...
  4. Kristina1

    you know what bugs me?

    I really like Karen's description that it's more of an endurance struggle than a fight. I had clinic yesterday and they were commenting how my FVC had come slightly up and on the way home I was reflecting how I really give it my all in the tests at clinic these days. In the beginning it wasn't...
  5. Kristina1

    Too disabled for ADA?

    Great post. Like some others stated, I find it frustrating that ADA doesn't require a designated unisex handicap bathroom. So often there is just an accessible stall in the ladies room and I need my husband's help I get stuck having to just hold it until we are somewhere with a unisex room or...
  6. Kristina1

    Hurricane Thread

    glad you guys are safe!
  7. Kristina1

    you know what bugs me?

    yes about constant paperwork! it doesn't help that everyone in the medical world seems stuck in the dark ages with fax machines. It took 3 weeks for my enteral feeding supplier (Coram) to process a prescription for gravity feeding supplies. It went like this: Me to clinic: They need you to fax...
  8. Kristina1

    Severe declining of ALSFRS-R and FVC

    im not 100% sure what you're asking here? but fvc is the breathing component in ALS. So it will affect your FRS scale in those 3 breathing questions Laurie mentioned. But I've heard of PALS whose breathing was affected last, so they had been in a wheelchair for years before needing breathing...
  9. Kristina1

    you know what bugs me?

    This is a great thread, I can relate to so many of these!! But the thread itself brought something up that bugs me. Lots of comments refer to 'stupidity'. The reality is all these people saying/doing something ignorant or just not pausing to think it through are people of average (and probably...
  10. Kristina1

    NewEngland members

    10/19 works for me too, maybe we can choose kid friendly area, i will probably have my family with me.
  11. Kristina1

    Kay is flying free

    I'm sorry. There are no sufficient words. She was such an amazing person who touched so many people.
  12. Kristina1

    Final battle against ALS

    Is someone telling you cannabis can cure als, or can/has cured cancer, parkinsons, and alzheimers? Anytime anyone suggests a product can cure a whole bunch of totally different diseases you can immediately conclude it's quackery or a scam. Cannabis may help with pain and symptoms like cramps...
  13. Kristina1

    eye gaze and eye strain

    No, I actually had lasik done when I was first diagnosed to make life easier-- I had extremely bad eye sight. It's been a huge blessing, only downside is dry eyes which being on eye gaze doesn't help, but I use drops regularly.
  14. Kristina1

    eye gaze and eye strain

    I use dwell but it's my preference. Ive tried what feels like a hundred switches and I just didn't like that method. I know it makes me a weirdo but dwell is easier for me.
  15. Kristina1

    eye gaze and eye strain

    Thanks Tillie that actually sounds like a much smarter idea. (i dont know why it didnt occur to me!)