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  1. P

    Ventilator and being moble - need walker advice

    Does anyone have any experience with a ventilator (one of those small - lap top size) and using a walker (on wheels) to transport the vent (and patient). This ALS patient is still moble, but needs a ventilator soon (they are looking at a LTV 950). The patient is hoping to use a walker on...
  2. P

    Question about respirators and care at home (please help if familiar)

    How much would you estimate the other 20% to be?
  3. P

    how soon?

    Three years is a long time for bulbar onset of ALS, from what I understand. Do you know what his lung capacity is at the moment? From what I have heard, anything below 35% is getting into a dangerous level where mechanical ventilation would be necessary. I'm assuming he is using BiPap, but...
  4. P

    Bipap alarm keeps ringing...

    Ok, look - perhaps others are afraid to say it (and I'm not the be all - end all ...I"m just giving an uneducated opinion that isn't worth squat) but, if your friend wants a vent, you need to insist on one now. Because it sounds like it's time (or past time). Probably the quickest way to achieve...
  5. P

    Question about respirators and care at home (please help if familiar)

    Davis07, are you saying that you think Medicare will pay for the vent and most care? We are also in Georgia.
  6. P

    Question about respirators and care at home (please help if familiar)

    I'm actually a friend of couple which is going through this. The patient is already on BiPap at night and for part of the day also. The lung capacity has been steadly declining for the past year and the last conversation with the doc indicated that they need to be ready with a decision on...
  7. P

    Question about respirators and care at home (please help if familiar)

    I don't think that all of that is correct - I know of people at home on vents and I'm also aware that they don't have 24 nursing care. I believe you are correct, however, that he will require someone to be with him 24/day. The one man I know of who is on a vent had limb onset, so his situation...
  8. P

    Question about respirators and care at home (please help if familiar)

    Hi. My friend's husband was told that he may need a respirator at some point (sooner? later? not sure) but the doc also told him, "Your wife won't be able to care for you by herself." Can someone elaborate? What type of extra help will the wife need and how much? He has bulbar onset , but...
  9. P

    Strange Situation

    Just my opinion so take it with a grain of salt: ALS is a very different kind of illness - with devestating effects and prognosis. There isn't a pretty side to it at all and I think sugar coating it will only cause bitter feelings- even in a young child- in the end. Try to be as honest as you...
  10. P

    Group Provides Financial Support for Caregivers

    Can you provide more information about what exactly you are looking for? Is there a process for this?
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