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Hi, y'all ,

I went to the Doc yesterday for my reg check and it appears that my breathing,breathlessness and related symptoms have deterioated.
Up to now I have suffered bi lateral ft drop, left hand arm weakness, neck drop and choking when eating..........

I have noticed getting breathless a lot more even at rest in bed...
I am awaiting a appointment at the pulmonary specialist......to be tested for a bipap...........what is it like??? what are the options ??? how out of breath are you guys ?? who uses bipap ??? all day??? nightime??

lots of questions , huh, 3 yrs in and this is a new realm for me??? I cope very well with limb probs .........but breathing ......thats serious s**t !

Is it correct that bipap,not only helps your breathing , but can be used at the earliest stages to preserve muscle function?

I have health insurance .........but it is basically crap and will have to pay for most of the costs related to the machine and subsequent ongoing costs, so what machines are out there that are being used and their advantages, particuarly as the breathing deterioates (WHICH ITS NOT!!)

thanxs for the replies in advance

a somewhat sad Boomer today !!
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MND:
"FREE AS A BIRD IN OUR MINDS, BUT NOT IN OUR BODIES"

Hello, Boomer--So sorry that you are in this predicament too. I am the Mom of a 40 year old man with ALS who has been non-verbal autistic all of his life.
So I can only speak from observation. Wally, Jr. decided he wanted a g-tube and needed to be cleared by a respiratory doctor before he could have anesthesia administered. Bad news--CO2 levels too high. We took him to a doctor in Newark, NJ who specializes in non-invasive respiratory treatment.
He recommended a Bi-Pap. Our doctor here wrote up the RX and our insurance came through. Wally, Jr. had been on an oxygen concentrator for a time and that was helpful. We weren't even aware of the weakening of his chest muscles--it seemed to occur so gradually. It took awhile to get him used to the Bi-Pap. Started with a mask, which he didn't tolerate at all.
The respiratory people sent up a less cumbersome interface--more like the cannula that he used with the oxygen concentrator, only thicker. He began to tolerate that and what a difference that has made in his life. He had stopped using the computer to communicate and now he is back to typing and faster than he did before. He asked his Dad to take him to the ocean and he was able to go to Acadia National Park in Maine--the Schoodic Point area of the park. He smiles alot and just feels so much better. I am sure he is clearing the CO2, but has not been tested for that again yet. He uses the Bi-Pap at night or when he isn't feeling well.

I hope you will have a chance to feel better too. Best to you.

Wally's Mom

Hi,
Check this site out for the type of nose piece that Wally uses for his BIPAP.
There are different sizes to fit your nose size so you might have to try a few to get the size that fits into your nose the best.
Wally's Dad
http://www.directhomemedical.com/mas...pap-bipap.html