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  1. U

    Just Dropping some Love by

    With all the ice bucket stuff going on I cant stop thinking of y'all. I quit hanging out here because I don't have ALS. I used all the tips and tricks y'all gave me to be able to breathe and do so many things. I have some rough times but generally my worst day doesn't come close to what any one...
  2. U

    Vpap

    I notice using the Resmed S9 Adapt SV VPAP it is hard to breathe without it. My heart races when I take it off. Is this something that changes after using it more. I just got it. I had the same thing happen in the lab.
  3. U

    Hopefully done with sleep studies for a while!

    Last night was another round using adaptive breathing and even though I woke up a few times feeling suffocated it was because I wasn't breathing and the machine helped immensely. Even oxygen dipped to 70% with instantaneous response to increased pressure. Confirmation my skeletal issues on the...
  4. U

    Sleep Study...Round 3

    After 2 sleep studies I have to schedule another one because the BiPAP made it worse. The next one is a month out and planning on an adaptive BiPAP. I would have thought that would be the first route. Numbers all over the place but it boils down to no sleeping on my back for the rest of my life...
  5. U

    BiPAP Titration

    Finally got to the point of titration but the tech could not find anything that improves my inability to breathe laying down. Even commented how bad things have deteriorated from the sleep study 4 weeks ago. Next step...another night of titration. I did sleep better last night than I have for...
  6. U

    Joint Support

    This may seem silly but my shoulders, hips, knees and ankles feel like they come out of joint often. I wake up sometimes and my knees feel as if they were ripped apart. It is as if the don't stay in the socket while sleeping. Same with the rest. When I walk I can't carry much because my...
  7. U

    Sleep Study Quesrions

    I got in early for my sleep study and the results were apnea and 70% o2 sat rate. The respiratory therapist asked me if I wanted to come back for titration of CPAP or positional training. I forgot to ask and am curious if these two events are going to happen over time or one cancels the other. I...
  8. U

    What a sucker punch...didn't see this coming!

    I thought things were going well and now the wife says I need to move out of the house I lived in before we were married because she can afford it easier than my disability payments would allow me to. WTF? I knew she disengaged when the docs said incurable and progressive 4 or 5 years ago but...
  9. U

    Time for a quick update...

    I have now had 2 visits with a neurologist and referred to the motor neuron specialist I have tried to see for a couple of years so things are moving along. I totally weaned off of the methadone and many problems seemed to have lessened. I went from a wheelchair to walking 1-3 miles a day. Spent...
  10. U

    Neurologist Appt!

    Woohoo! I have a neurologist appt scheduled for Jan 31! Hard for me to believe such a little thing happened to fall in place and gives me such joy. Officially off of e methadone...day 6 today so the worst is over. I am drug free..and almost muscle free. :roll:
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