insulator for bipap hose...

[rick/Wpg]

My God Barry! Don't have a second thought about bringing up turning in bed! The thing I value most about the folks on this forum is their honesty in dealing with this damn disease....and you along with Rose, Beth, Glenn, Joel and so many others who are dealing with bulbar first have been such an inspiration and help for us all! Thanks to you guys I am proactive in getting started on voice banking, looking at the peg tube, etc that I will never be able to repay you all for the quality of life that your info and help will add to my and my families lives!
Whenever you guys talk about wanting to have a beer or a favorite food, or to just be able to speak, it breaks my heart! Yet I need to hear it! Otherwise how can I prepare for what lies ahead?
Kind of funny, you mention forgetting how good you have it, and I feel the same way exactly in my situation - yet our symptoms are on oposite ends of the scale!
This disease I think, is like being in combat together, it brings a closeness and appreciation of the bravery of others that is beyond comprehension!

 

[BarryG]

Rick, it is combat. Brothers and Sisters in ALS. Together we can defeat it, I know it!:grin:

 

[GlenBrittle]

Rick,
To clarify - I am coming closer to bulbar and BIPAP. My experience with the mask and hose is 7 years of CPAP for sleep apnea. I look at the bipap / vent as a new experience. No more mask actually sounds like fun.

Barry,
Combat ... I like it. We go forth to kick ass. Every day.

I like these points to remember:

Its not a good day unless you piss someone off (intentionally)
Smile , it makes people think you are up to something.


Glen

 

[rick/Wpg]

Thanks Glen....7 years is a lot of 'hose time'! I like your points....off to accomplish the first one shortly
You got it Barry.....hmmm...since we live in a world of abbreviations would Brothers and Sisters in ALS be shortened to BS in ALS?

 

[Leslie G]

Rose,
Wish I'd read your post before I made my husband's biPap hose cover~~took 3x to get it wide enough to go over the ends. Never thought of a rubber band either! Love these posts. Soooo helpful.