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King Rat
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Mom told me she felt like she needed to use the BiPAP machine last night. Not after going to bed. That's been normal for 7 months. When she was still up. She didn't because the thing isn't very mobile. If she's feeling like she needs it when she's up, that's a very new thing.

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burgunder From: burgunder Date: February 25th, 2008 03:40 am (UTC) (Link)
Man, reading this just made me want to punch things. It hadn't occurred to me that her lungs could be what goes. That would suck, that would be scary. I guess I imagined it would be her heart and it would be like going to sleep.

I recognize that I am totally not helping.

Just a shout out that, if true, this latest revelation SUCKS MONKEY BALLS.

No more monkey balls for Phil, please. He's had enough.
gkr From: gkr Date: February 25th, 2008 03:56 am (UTC) (Link)
Most ALS patients die of pulmonary (lung) issues. Until last week, I thought it was when the diaphragm went. I.e., they'd lose strength on inhaling. Turns out that at least as frequently, if not most of the time, what happens is chest muscles that are used to exhale deteriorate. Which seems to be what my mom is experiencing.

There's no confirmation that this is what is happening, because she hasn't seen a respiratory therapist in a while.
From: gargoylettelc Date: February 25th, 2008 04:52 am (UTC) (Link)
There is not going to be any 'technical' confirmation that accessory breathing muscles are failing. They are skeletal muscles, like the diaphragm. You have not mentioned what happened when you met with the hospice folks. They could be very helpful with this situation. Does anyone monitor her oxygen saturation?
gkr From: gkr Date: February 25th, 2008 05:16 am (UTC) (Link)
That's what I mean by confirmation. She hasn't had anyone test her breathing capacity in any way since October. No one is doing that until she goes to a respiratory therapist.

I'll post something on the hospice meeting and my mom's reaction. The short version though is that she's not going to use hospice right at the moment.
From: gargoylettelc Date: February 25th, 2008 05:23 am (UTC) (Link)
I know I don't have all the details, but, from what I can tell, it's easier to get hooked up with hospice earlier than later. I know of several cases where it's done in a week for a few days of actual death, and it's always too late by then to be helpful. She should be able to call the shots of what she wants done, vs things being done to her. Also, there are oxygen saturation monitors that you can buy, that seem to be fairly accurate, when compared to my oximeter. It's not a gigantic proceedure, but having skilled personnel can help interpret readings vs symptoms. Perhaps having O2 will help. I know you want Mom to be comfortable. Hang in there, and encourage her to accept the extra help, (yeah, easier said than done)
gkr From: gkr Date: February 25th, 2008 05:49 am (UTC) (Link)
Yah. Both Joe and I have told her that sooner is better than later. Especially if she's concerned that they'll do things she doesn't want. Sooner gives her and them time to get to know each other and get things set up. Later means a bunch of people who know very little about her will swoop in.
la_roja From: la_roja Date: February 25th, 2008 03:45 am (UTC) (Link)
I'm sorry to hear that. As an asthmatic I know how frustrating and scary feeling like you can't breath well is. That is an awful situation.
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