Old 04-16-2009, 08:17 PM #1 (permalink)
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Default Bipap Good News!

My husband had his ALS clinic visit today and the respiratory therapist told us she has treated two patients that were on their bipap for over 13 years.

George is on his bipap 24/7. His FVC's were 18% today.

We both found that very encouraging, as his bipap is meeting all his breathing needs.

Wanted to share some good news!

Patty
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Old 04-16-2009, 08:31 PM #2 (permalink)
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Patty,

Glad for y'all!

How do you manage to bathe him? And does he have backup battery? what about travel?

My husband is not anywhere near having breathing problems, just bulbar symptoms and upper limb deterioration. ( just - ha! like that's cool!
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Old 04-16-2009, 09:00 PM #3 (permalink)
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Patty, so , you are not considering a vent?

With being on a bipap 24/7 I can't help but recommend a vent as they are soooo much better.

Sorry if I have step on ground you guys are not wanting to think about.
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Old 04-16-2009, 09:51 PM #4 (permalink)
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Patty-

I also wonder how you make it portable? I've had a cpap for about 4 yrs for use at night only.

Only had ALS for about 10 months, officially.

Today I FINALLY went to the DME place and got the new nasal mask, tubing, filter, water container...and I'm hoping to have that "refreshed" feeling in the morning!
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Old 04-17-2009, 03:35 PM #5 (permalink)
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Joel

I hope and pray that someday, when bipap is not working for his breathing, that he too will decide to vent/trach but he makes a good case for sticking to the bipap for now as he is so comfortable and actually the settings stayed the same for one year. The RT just upped it 2 steps. The ALS clinic really thinks he is doing super.

Now, regarding the portability of the bipap. My son made him a rolling/pull hard case and drilled the holes for the bipap hose to attach to his mask. With this, we can take him to soccer games T-Ball games of grandson and it works great!

As you can tell by post, I am delighted that this bipap works so well for George.
He is the greatest guy and rarely ever complains.

The shower only takes about 20 minutes daily and we are blessed to have a aid that comes daily for shower, shave needs. During that 20 minutes he does great being off bipap, but is glad to get right back on.
George's legs are not affected, to date, and he is able to walk from room to bath.
We really don't tax him for walking distances and use a portable wheel chair when we are out and about.

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Old 04-17-2009, 09:47 PM #6 (permalink)
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Patty,

that's really great!

Could you post a pic of the rolling case?
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Old 04-18-2009, 10:31 PM #7 (permalink)
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I am not computer savy with pic post etc. But......used it today for soccer game and it was unbelievable! We now are able to go just about anywhere due to my son's brainstorming. This is mom's bragging rights but this son is our biology teacher son with a carpenter's/engineers brain. But most important, he has a heart of gold and loves his Dad so much.

We are hoping to go to see a 3D movie with our grandson, a trip to the NJ boardwalk and get to go out for a dinner out.

Hoping and praying for you all.

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Old 04-18-2009, 10:39 PM #8 (permalink)
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You have every right to brag! God Bless him and the both of you!
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