Bipap, Crossed another line

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Vincent

Senior member
Joined
Dec 30, 2013
Messages
999
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
Hot on the heels of another visit to Sunnybrook, with Barrie being very well represented, I've been prescribed a bipap. I'm used to using a cpap so getting used to a mask isn't an issue. But with pft at 54% and figuring on a 2% loss per month.... do the math. I was kinda hoping to deal with this later. No such luck. It is what it is. ALS sucks.
Vincent
 
Vincent it is great that you getting bipap as cpap is BAD for ALS!
 
Vincent, there is no point to that math. Even if FVC decline were strictly linear, which it's not, it doesn't correlate with survival or function except at a very gross population level, which is confounded by referral biases (e.g. people who go to MDA/ALSA/govt clinics get tested more and studied more, and sicker people tend to show up more often).

Your future isn't written, so keep living it until you can't.
 
Laurie, so true. I hope you never stop posting here.
- Charlene
 
>Laurie, so true. I hope you never stop posting here.

Ditto that!
 
Ditto that ditto!
 
Vincent, We have found that you can dwell on the numbers or do your best to live your life to the fullest. Easier said than done but we try. Steve has a lot of breathing issues but we just took a trip to Nashville. I drove and we had his trilogy at the ready to hook up in the van. Activities didn't start til 11 am or so because he sleeps in and generally they were over by 4 pm. But while we were out, we had a great time. My son and I would spend good time just the two of us in the morning having a walk or talking. Steve had his rest and we had family activity time. Way different than the 12 hr high energy days before but still very satisfying.
 
PERFECT Statement - "Your future isn't written, so keep living it until you can't."

Love Life, LIVE LIFE
Doug
 
Yes, that number is a shock when they say it aloud. But so much else matters.

In the last few days I have...
Laughed with my husband, seen my daughter inducted into Mortar Board, seen my son with his big catch, seen my dog Bella nose to nose with a 400 pound steer, the blooms of my irises, my sparrow duplex, plus much more.

From Shawshank Redemption- you've gotta get busy living,or get busy dying.
 
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