That's great your being proactive vs. Reactive. I wish I would have started NIV sooner instead of doing the two years of struggling to breathe and talk. It's definitely not something to be afraid of and I can still breathe some on my own. Two tips though: don't let it get too hot and keep a charger for if it in case it runs out of battery.
Hi Brooke! Soooo happy to see you post about this. I worry some of our fellow pALS don’t realize how much a non-invasive ventilator can help - although if you think about it, of course having enough air and not too much carbon dioxide is good for us. Plus it’s better to get used to it before you really need it. I’ve had mine two months now. My mask covers my mouth and my nose; I prefer that personally, although then I must depend on texting or signing to communicate since I can’t talk. I’m having fun referring to it as getting pumped up, reinflating, etc…. Sense of humor required 😅. Thanks again, 💜 Patti
My BiPAP and cough assist devices are the most important part of staying alive. I just got my third BiPAP device this week. Resting the diaphragm and removing CO2 is like charging a battery. Bob O. Diagnosed 2007
I’m glad your husband is doing well on his Cpap. But a Bipap is a completely different machine & works the diaphragm muscles in a way different way. It’s for people who are having respitory failure.
That looks like my CPAP mask. These days they make them so minimal which is great. I only have to wear mine asleep though. It will be an adjustment but you get used to it!
i had a similar face strap and I broke out all over. tried 4 kinds, even wrapping with softest baby cotton. my dr told me yesterday i have to use it again😣
Hey lady! I’m 40 & 3 years in since symptoms on set with ALS & clonic spastic seizures. I got my bipap a year ago. It’s totally weird at first but I love mine now! My pulmonary function has dropped from 115% to now 80% in 9 months. I wear it about 13 hours a day, love it now. But probably won’t love it so much the day I have to wear it 24-7 🩵💙
