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beccag

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hello everyone, becca here...my mil has als and i was wondering about bipap. she has just started to not be able to sleep at night and has lots of anxiety now...plus her als has caused dementia too, which i know is not that common. anyhow, the neurologist has arranged for a ABG on monday as he thinks she is probably having some breathing troubles at night. he said those things were symptoms of too much co2. i know this will lead to her needing a bipap.....but i would appreciate your experiences with bipap...what is it all about, and does this mean she is in the end of the disease? the neuro indicated before that with her specific als/dementia connected, half of the people are gone within 2 years of onset of symptoms, the other half no longer than 5 years. she has had symptoms 31/2 so far....i guess i can do the math...but i am just interested in your experiences.....it would help me think it through...
thank you for any info you can offer. i appreciate it.
becca
 

brooksea

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Hey Becca!

Hopefully your Mom in law will not go into a fast rate of decline.

The BiPap in itself does not mean she is in the end stages. It sounds as if she does need one though.

My husband uses the BiPAP at night. His breathing capacity is in the 90s, but the ALS clinic wanted him to start using one, as they feel it helps PALS breathe longer without invasive intervention.

The BiPap machine has a hose that connects to a face mask or nasal pillows, whichever is more comfortable and tolerable for the user. Positive air pressure is used for inhalation and exhalation. There are settings that a RT or Pulmonologist will figure out for y'all. I wrote our settings down, just in case they got moved somehow. We have an old machine form the ALSA loaner closet. There are nice small models that have come out and I don't know how the settings work on those. Ours has dials.

Someone else may have more info for you about this.

Good luck with your MIL! Please let us know how she is doing.
 

fiddleplayer51

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Hello Becca,
Sorry about your mother in law. It's a scary time, but don't worry that this signals the end. My PALS husband was diagnosed March 28th with bulbar onset ALS and just got his BiPAP hooked up yesterday. His machine is a ResMed VPAP III. He is finding it comfortable and not at all difficult to get used to. He got it through American Home Patient.
His respiratory status seems good so far with O2 sats in the upper 90's and a vital capacity of 4.5 L, but his doctor recommends the BiPAP now anyway because he says patients who start BiPAP early seem to do better. So, as you can see, it doesn't necessarily signal the end.
Your mother in law will probably feel much better after she starts using BiPAP at night.
Here is a link to a very informative PDF about BiPAP written by Margie Petrakis RN who is a respiratory therapist at the Forbes Norris MDA/ALS Research Center in California. You will learn alot from this article:

http://www.alsconnection.com/Bilevel for Website3.pdf

All the best to you and your mother in law. Take care and I hope everything turns out okay.
Jane
 

leegardens

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Bi-pap

Hey Becca,

We got a Respironics bi-pap machine ten weeks ago. Our machine, which is a new model, had the settings done by the respiratory tech. There is a small integrated heated humidifier that I fill with distilled water. The filter, the tubing, and the humidifier need to be cleaned regularly.
The tube connecting the mask to the machine is long enough so that you can turn over to the other side during the night while sleeping. All we have to do is turn it on and once my PALS starts inhaling, the machine starts its job. We had a few problems understanding the instructions before we were familiar with the device. It is easy to use once you get used to it. It only weighs a few pounds and we took it all over Italy for a month and it worked fine.
It is very quiet and I have no problem sleeping a few feet away. There are some apnea alarms on the machine and they can be turned on or off. This same machine is used for people with snoring problems and related apnea. In fact our tech uses it for snoring. Our insurance pays for ours.

We did have some problems with the mask at first. We were given the nasal pillows but my husband has a large nose and the pillows pushed into his nostrils and was very uncomfortable.
The new mask he has is full face and it comes in different sizes according to your face. Jay finds that easier to sleep with. There are cushions to position the mask on his face and there are straps around the top of his head and the back of his head towards the neck to keep it in place. The part of the mask that covers his nose and mouth has a soft gasket to seal the face mask. This mask is good for someone who is a mouth breather or has a problem keeping his jaw closed while breathing. I have noticed that my husband who was always a nose breather breathes with his mouth more open now so this mask works better for him. He also finds that he gets congested with the bi-pap so he now uses Flonase nasal spray- by prescription- and that is helping with the congestion issue. I have been using Flonase for allergies for over ten years and it works great. Try to find out about congestion problems with the machine when you get it. The mask is most important because if the mask isn't comfortable the person won't use the machine. We are seeing the respiratory tech on Tuesday to investigate other masks for daytime use. It is difficult to read or watch tv with the full face mask if you need glasses. I would ask about that. There are quite a few mask alternatives.

Here is a link for a good article about Pulmonary and ALS:
https://psg-mac43.ucsf.edu/als/Bilevel for Website3.pdf


I did not ask for the results of the breathing test when they first gave my PALS the test. I didn't realize what was coming and when they told us he needed a bi-pap when he got his diagnosed I was in such shock about needing the bi-pap immediately I forgot to ask. Last week when he had another breathing test I asked the tech for the results from this test and the results of the one ten weeks ago. My son had gone and spoken to a doctor at Hopkins ALS center about ALS back in April after we got the diagnosed. The doctor was great and gave my son some great info. He said that ususally when someone's lung capacity is at 60% they have a year to live and once it gets into the low 30% range that they are at the end. My husband was at 60% when we got diagnosed and ten weeks later is at 39% so it is not good for us. Be sure you ask for the lung capacity and the NIF, results, which is explained in the above article. When my husband got the b-pap I asked the tech what happens next with breathing? He told me you start out at night with the bi-pap, then you go to the bi-pap fulltime and after that it is a decision about the ventilator. In fact when we went to the clinic las week they asked me if we had decided about the ventilator yet. Again shock and not ready for these next steps. By the way my husband has bulbar and dementia also. I think a lot of people have a much slower progression regarding the breathing issues.

I keep a journal of the journey and in it I keep a record of what the ALS clinic tells me. I find that when something is explained to me at the clinic that I understand it in the moment but when I try to explain later to my kids what was said to me I really don't understand it. Therefore I bought a little Flip video that holds an hour worth of memory and I am going to see if the ALS nurse on Monday or the ALS clinic will mind if I tape what they tell me. My computer savvy son said YouTube has private videos that are like IM'ng and that I can put the video on and he can then see it and be part of the process with me and it is not available for the world to see.
Good luck Becca. I know this is long and rambling but I hope this info helps. Lee

I
 

fiddleplayer51

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Lee and Becca,
This is funny indeed! The link I gave Becca takes you to the same article as the link Lee gave. I just had to chuckle when I clicked on Lee's link and came to the same PDF as what I had posted yesterday.
It really is one of the most informative articles on BiPAP I've read yet. I hope lots of people read it.
Thanks, Lee, for the chuckle.:)
Peace,
Jane
 

brooksea

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Hi all!

Great article about the BiPap.

I would just like to point out that if you have Bulbar symptoms, it is sometimes hard to get a good reading with FVC test. This was the case with my husband at his last visit.

The comment from the doc at Hopkins seems, to me, to be a bit too over zealous in predicting PALS longevity. It would be terrible to use that prediction using the FVC on a PALS with Bulbar onset, who cannot control the mouth muscles to produce an accurate test.

Don't get me wrong, I'm sure the doc has some logic behind his opinion. But I believe it is just that, an opinion.

Like I always say: "I ain't no doc." But I am a CALS!
 

fiddleplayer51

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CJ,
I know what you say about getting a good reading with bulbar symptoms. My husband just could not keep his mouth sealed around the tube he was blowing into. The respiratory tech doing the test kept saying "Just make sure to keep your mouth tight on the tube when you blow into it. You're letting the air escape." This was early on when we were first getting a diagnosis.
Needless to say, she was not familiar with ALS patients and didn't seem to grasp that he was incapable of keeping a tight seal. He'll be having another PFT in July with a pulmonologist who specializes in ALS.
 

CindyM

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she was not familiar with ALS patients and didn't seem to grasp that he was incapable of keeping a tight seal

I have seen this over and over with my Mom Alzheimer's. A nurse at a hospital would put an IV in where Mom could see it, then when she noticed Mom picking at it the nurse would say, "Don't forget to leave that alone." Mom would smile and nod- and remember for about 3 seconds. They never did learn that asking an AZ patient to "remember" something is about as effective as asking a PAL to "try harder."
 

lynster

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Bi-Pap

Hi Becca,

My husband got a Bi-Pap with a full face mask after his breathing went south in about a month's time. He uses it now at night, and it is keeping his O2 sats in the 90s. When he went in the hospital, they were in the 70s (!) Other than the fact that he had to shave his beard to get a good fit, he has had only a few minor problems dealing with it. It has been really worth it for him to be able to actually wake up after a good night's sleep.

Hopefully, you will get a machine that works well for you. The major advantage that I see is that I have a new husband - after all, I don't recognize him without a beard!
 

fiddleplayer51

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Lynster,
You enjoy that new hubby of yours! :wink: Glad the BiPAP is working out so well.

I'm curious about if others had to sign a release before being given a full-face mask. Our BiPAP order specifically stated that my PALS was not to have a full-face. When we said that my PALS breathes alot through his mouth because he cannot keep his mouth shut and therefore we'd like a full-face mask, we were told by the pulmonologist at the ALS clinic:

"We usually do not recommend full face mask because
of two potentially serious problems. The first is there is
a high likeliness of aspiration if you were to become sick
in the night and vomit. The second is that should there be
a power outage and you were unable to remove the mask you
could suffocate. Because of these risks we don't
routinely prescribe the full face mask. If a patient wants
to use it with these potential risks we can order it but you
will have to sign a release which we can fax to your
homecare company and they can return it to us."


I'm just curious. The reasons are pretty obvious, but I know alot of PALS have full-face masks.

Thanks for sharing any thoughts,
Jane
 

Al

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My mask has exhalation holes. The air has to go out somewhere so you shouldn't suffocate. I guess It would be pretty messy if you threw up in it and you could aspirate but what are the odds of that? Do you have a vomiting problem already?
AL.
 

fiddleplayer51

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Hey Al,
Thanks for responding. That's nice to know about the airholes.
No, my PALS does not have a vomiting problem. And another thought about vomiting is that if a PALS has difficulty swallowing, he/she is likely going to aspirate anyway regardless of whether or not there's a mask there. This would be especially likely if they're lying down.
Thanks again for your input.
Jane
 

patricia1

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CJ,
I know what you say about getting a good reading with bulbar symptoms. My husband just could not keep his mouth sealed around the tube he was blowing into. The respiratory tech doing the test kept saying "Just make sure to keep your mouth tight on the tube when you blow into it. You're letting the air escape." This was early on when we were first getting a diagnosis.
Needless to say, she was not familiar with ALS patients and didn't seem to grasp that he was incapable of keeping a tight seal. He'll be having another PFT in July with a pulmonologist who specializes in ALS.

I have Bulbar and they use a mask for my breathing test because I cat make a tight seal.
Next ime ask for a mask

Pat
 
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Thanks for the hint about asking for the mask Pat.

Our first visit to the Forbes Norris ALS clinic, they did a breathing test and the Resp Therapist (who was real nice) kept yelling (seemed like yelling to me) at my father to BLOW BLOW, HARDER, COME ON, YOU HAVE TO DO BETTER. I almost jumped at of my seat to tell her to LEAVE HIM ALONE!

It freaked me out a bit. AGain, I think she was nice overall, but I wanted to stop her when she was pushing my father. Is this normal, to keep pushing during these breathing tests?

My father's FVC was 66% and I believe he has bulbar onset (no dr. has actually said that, but that is my assumption from what I am reading). The RT said when he got to 50% he would need a BiPAP. He already can't sleep on his back. So I was glad to read the posts here about PALS starting BiPAP when the FVC was higher. I'll definately ask about that next week when we go back.
Bette
 

PDaddy

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For what it's worth I'm limb onset and have had one FVC test (so far) and the tech yelled the same thing to me. It must normal for them. I had 80% 83% and 90%...
 
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