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Distinguished member
Oct 5, 2007
I know everyone is different, but.....if someone chooses not to use a bipap, will they tend to have a gentler, less noticeable decline in lung function? Would they be more likely to be carried off by co2 levels in their sleep before they have 'difficulty' breathing?

Hope this makes sense


Hi Steve

Not sure about your question about "not" using bipap.

My husband has been using bipap now 2 wks. His oxygen in his lungs is super, 96, which is normal. His problem is his diaphram does not work because of his condition and he is not able to breath in and out to get oxygen moving properly in lungs so he gets out of breath, tired, etc.

Also, feels as if he cannot lie down without the bipap which pushes the humidified air pressure through his lungs.

Hope someone can help you answer "your" question, but wanted to let you know what the bipap is doing for my hubby.

Hi Patty

Thanks for the info :)

My Mother is not too keen on using a bipap (she's claustrophobic) so I am trying to see if there's any advantage at all in not using one.
Hi Steve. Basically I have been told by my doctor, that if I don't use my Bipap I will die. He doesn't even want me sleeping upright in a chair. Says there is a possibility I may not wake up. That killed plans for airflights longer than 8 hours or so. Just last night my machine was broken when I went to bed at 2am. I called the emergency number which is the hospital in Kingston, about 5 hours away. They were willing to send it by courier but 5-6 hours would have been too long to stay awake. They called to a hospital only 1 1/2 hours away and sent one out by taxi. It arrived by 5am. They also said I should have 2. One for back up because in my case it is considered life saving equipment. We were quite worried for a while about what I was going to do. I guess the health care system here in Ontario is not as bad as we sometimes think.
Hi Al

Thanks for the response, sorry to hear you're not doing so well. Hope you level off soon. My Mother seems to be breathing ok at the moment, though her speech has become much worse (slurring etc) these past two weeks or so. She's by no means struggling for breath but is it the case that you wouldn't necessarily notice or is it all too obvious?


You may notice her getting out of breath while talking. She may feel breathless while lying on her back or laying in a recliner chair or when carrying something in front of her if she is able. Those are what I noticed with me.
She can't hold anything really, or lie on her back because of her arthritis, but she seems ok with her breath when she's sitting down. Thanks for the help, I'll keep a close watch on her :)


im so sorry to hear about your bipap incident,i hope you are ok now and managed to catch up on your sleep, you definatly need a spare,you are too indespensable to this forum for another mishap.
do you think your mum is ready for bipap or feeding tube? is she still depressed?
i can give you my email or phone number if you ever want to chat.
also on monday there a program about astronomy and steven hawkins,he is going to also talk about his disabilities with als,should be good.

on the subject of bipap, i developed respitory problems 14mths ago,breathless,low blood pressure. i now need to sleep with 4pillows and feel soon i'll need 5.
i have had 2 episodes of choking in my sleep and wake up unable to breath,it's very scary. is this a issue for a bipap/is it a lmn bulbar issue?
bestwishes to you both

At what FVC number were you advised to go for the Bipap? I am not yet diagnosed, but I do have those vivid dreams people talk about with respect to respiratory warning signs. So far, no headaches, but I seem to be out of breath quicker than before.
Hi Caroline

My Mother's not depressed as such, its just sometimes her pain gets her down, other times she's as bright as a button :)

Sorry to hear about your breathing difficulties. Hope you get it sorted soon.

Best wishes

Steve :)
My FVC was in the mid 80's when I got the Bipap in Jan. 05. It's now in the mid to upper 50's.
Al, Do you have battery back-up in case of power outage? You need that too.
Hey Al
That must have been tense last nite.....if that had happened with a snowstorm it would have been a hell of a lot worse!....that is a great tip to have the extra machine if you live very far from a hospital...and the battery back up is a very wise idea too
I swear Al...I intend to go though your threads and make myself up an ' ALS tips handbook".....your experience and insight has helped us all so much
Take Care
Yes we do have a battery back up. I've been thinking a second one of them might be a good idea too. It had snowed earlier in the day. Taxi driver wasn't impressed with the snow out here in the country.
Al- so scary! I am so glad they took you seriously and sent one out by taxi. If I have to drive up to Canada to deliver a back-up, I'm on my way before you can click "submit reply!"

Please take care, my friend! Cindy
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