Recent content by adozi

  1. adozi

    When to Vent

    You should also check into what resources the VA /Medicaid /Medicare provide. Don't just trust them.
  2. adozi

    Bedding tips

    I have this pillow. Really great. It has a dip for your head. Perfect for someone with a floppy neck, like me. You can google it. I forget where I got it.
  3. adozi

    Concussion

    Forgot to mention, my symptoms appeared directly after my stroke. I had stroke symptoms confused with with ALS symptoms for years.
  4. adozi

    When to Vent

    I got a vent a few months ago. In my opinion, it was too soon. Like you, I had no shortness of breath as long as I was in the right chair (my wheelchair). 93-96 O2. The thing I wasn't prepared for is the amount of preparation it took. You should get a hospital bed and holder for your wheelchair...
  5. adozi

    Concussion

    I've had a series of internal brain traumas. I have an arterioveneous malformation, which is basically a a tangle of blood vessels in my brain that would continue to grow over the course of my life. That could be disastrous. It was the size of a pringle, rounded, when i was 17. So they start to...
  6. adozi

    Peg?

    I have one and love it. Even though it's totally necessary now. I had it for like half a year before i used it for anything but pills. Remember, you don't have to use it. It sounds like you're coughing a lot. Maybe you can use the feeding tube for most of of your nutrition, and just pleasure...
  7. adozi

    Foot Drop?

    We got an AFO from our local medical supply store for my left leg and a special kind for my right one. The second kind took forever, and had to be prescribed by a doctor. The first (I actually got them in the opposite order. I don't know why I put it that way ) was just as good. Maybe that was...
  8. adozi

    AfraidButNotAlone no longer afraid...

    So sorry about your husband. Rob was a good friend. Take care.
  9. adozi

    22 and freaking out

    No, symptoms do not just appear overnight. So sorry about your mom. Please read the stickies.
  10. adozi

    Trilogy vs bipap

    Thanks, Laurie. I didn't even think to look there. It was just some customer service rep who answered my email. My mom has called the reps who were going to rent the trilogy from) and a company nearby that we have a relationship with, neither of whom carried it.
  11. adozi

    Trilogy vs bipap

    I corresponded with Resmed, because we couldn't find anyone here who has it. They said the following: Resmed Thank you for contacting ResMed. The Astral ventilator is not currently for sale in the US. Please contact your doctor if you need further assistance with your therapy. I asked if...
  12. adozi

    Things I wish I'd known about earlier that make life easier with ALS

    Good point. Always think, is this going to work for me in the future, when you make a purchase or renovation. something as simple as a small ramp can make your life easier. Get an AFO (ankle foot orthotic) if you have a foot drop. Doesn't have to be prescription. Don't get an expensive one...
  13. adozi

    not totally glad to meet y'all

    I planned to wear purple ones to my wedding, but they got to be too heavy. :-/ Well, the important thing is that you know there is a solution!
  14. adozi

    That is great Nancy! Good luck. Thanks for letting me know.

    That is great Nancy! Good luck. Thanks for letting me know.
  15. adozi

    not totally glad to meet y'all

    Get an AFO (ankle foot orthotic) for the for the foot drop. Simple, plastic, inexpensive, order online, should be about $30. Sorry you find yourself here. It's not going to be easy, but you aren't alone, and there are great people here. :)
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