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My neurologist has suggested I start using BiPap since I have had a slight decrease in my ability for intake of air. I would appreciate any comments pro or con regarding experiences with BiPap. God Bless all PALS and CALS, Ann
Ann, My name is Tony. I believe you will find that the bipap is a good idea. I used one for a short time and felt that it enabled me to breath more easily during the day. (I wore the bipap as I slept ) what can be an issue is finding an attachment that suits you. If you plan on using this at night you can't be a "mouth breather", if you are, you will have to go to the full face mask that covers the mouth and nose. Some may find this difficult to get used to. The benefits from the bipap as I understand it anyway are that it aides in both inflating the lungs and helping in getting rid of carbon dioxide. Having said that , the bipap can always be worn during the day.
You may be wondering why I no longer use it. Well, I no longer have the use of my arms, or legs for that matter, and can no longer speak. I communicate with an eye controlled computer. Anyway having somebody else put this thing on you and not being able to adjust it or being able to tell the person stuck with the task of doing it for you what you need is very very frustrating and can be, combined with everything else we as PALS & CALS are dealing with, very taxig on any relationship. So, in a nutshell if you can use it do so. It can't hurt. I sure hope this helps instead of raising more questions. Its just my experience with it. Tony
Hi Ann, My father is a PAL and I am one of his caregivers. He is currently in hospice care (at home) and the reason he is still here is because of bipap. He has been using it for just under a year and at first he resisted using it. Now he relys on it. Here is what I suggest. Use it it can't hurt and it will help if you have diminished forced vital capacity. I'm sure your doc is only suggesting nighttime use now. It's a good idea to start now so if you do end up really needing it you are used to it.
A couple of things to keep in mind: It does take some time to get used to. It has bi-level pressure that will be adjusted by a respiritory therapist. They can lower the pressure if you find you can't tolerate it. DEFINATELY request a humidifier, it made all the difference in the world w/my Dad. There are indeed many interfaces available. Finding the right one is key. Consider using for than one and switching them as needed. If you are a mouth breather you can use a simple chin strap to keep your mouth closed at night. Dad uses the "Swift" and the "Breeze " and finds them very comfortable. With the "swift he is able to wear his glasses.
Good luck and God bless. Let me know if you have any questions, Janine
Back in July I was be fitted for a bipap device to assist my nighttime breathing. My ability to take a good breath of air decreased by 50% in one year. My mask just covers my nose and mouth. Don't settle for any other type. I tried the nose only type & I know that face mask is the only option I have due to my breathing through my mouth at times at night. To this day, I still can't wear it all night long. Nighttime sleeping is a problem not a problem. I guess I'll worry about that when I can no longer get a good night sleep.
The important thing is studies have shown that for PALS if you use your BiPap at least one hour per day, it will prevent our lung muscles from getting fatigued and you might live longer.
Don
http://alsdon.blogspot.com/
last posting: 12/24
I have had one and using it for one year now. The difference I found is my energy leval. With the use I do not get tired out as I did without the Bi Pap. It takes a little time to get used it and whitch one is the best for you. I first tried the nostral and then the mask and now use the nostral. That workes best for me. Of course you know every one is difference. Good Luck Chris
Thanks Tony, Janine, Chris and Don for your comments. This helps me to make the next decision in my care. Who better to ask than those "who have been there and done that"?
God Bless you all, Ann
Ann,
I have been using a bipap for almost two years now every night. I look forward to getting it on and cranked up and find that I sleep so much better and awake rested. Some find wearing the nasal mask disturbing and it can be if you tend to be clausterphobic. I started out feeling a little weird so I wore it only as long as I could reasonable tolerate it and then quit for that session. In a few days you will work up to being able to wear it all night, or it may take a little longer. I find one of the keys is to have your respitory therapist carefully fit you for a mask and try a number of them until you find one that is comfortable and doesn't leak. I cannot wear the gel type nasal mask because it leaks on me but some folks find that they work fine. There are full face masks that cover the nose and mouth and there is a mask that just fits into your nostrils as well as the one I use that just covers the nose and the mask is constructed so the air pressure inflates the mask and contours it to the face.
When my neurologist prescribed the bipap for me my breathing capacity (FVC) was at 65%. In the two years of progression it has gone down to 50%. I still find that I only need the bipap at night because when laying flat it is more difficult to breathe. As progression continues to rob my breathing capacity I will go to using the bipap during the day as well. Some PALS remain on the bipap for a long time and do well. Others reach a point where the bipap is not sufficient and it is time to consider an invasive breathing assistance, also called a vent.
There are several sites on the Internet that give more detail on the use of non invasive breathing assistance but I cannot recall them at the moment. Maybe someone else can suggest them in their comment.
But it is so important to have a respitory therapist teach you how to use the bipap, adjust the settings so you can ramp up to more aggressive settings, and fit you for a mask.
I am not a healthcare professional and the comment above is based upon my personal experience and following the reports of others.
You will find it a relief and make sure to give it a good try.
Ole Chuckles
Thanks to everyone for your informative comments here on an issue that's been heavy on my mind. Here's an internet site that seems to be comprehensive and informative about issues surrounding BiPAP: http://tpals.org/bipap.htm
My friend Sue (dx bulbar ALS Aug. 2006) is having a lot of trouble sleeping, waking up every couple of hours all night long. Her FVC score dropped from an August score of 83% to 39% in December. I went along with Sue to her December clinic appointment to take notes for her, so I know how clearly and strongly on that day her doctor recommended that she see the pulmonologist and be evaluated for BiPAP. He also told her in no uncertain terms that she needed a feeding tube, since she had lost 20 lbs. since her last visit in August (he had also recommended the feeding tube to her at her August clinic visit).
The plan was for her to be seen by the pulmonologist when she went into the hospital for the feeding tube. Unfortunately, a week after the December clinic appointment, Sue cancelled the feeding tube. Cancelling the feeding tube also had the unintended consequence of leaving her without an appointment with the pulmonologist.
Now, just four weeks after her neuro clinic appointment, Sue is not doing well. She looks pale and exhausted. She feels exhausted. Who wouldn't--not enough sleep, not enough oxygen, not clearing out the carbon dioxide, spending hours each day simply trying to get enough calories to stop her weight loss. I know she's lost more weight in the past month; the jeans that fit her in December when she saw her neurologist now hang on her.
I guess what I would wish for Sue is that she had taken her neurologist's advice in August and gotten herself fitted and used to the BiPAP and feeding tube before it became so necessary. Sue has talked about how scary all of this is. I can't possibly imagine how much--to say that I can is just ridiculous. But I think back to others who post their stories on this site and on other ALS blog sites, and I see that adaptation and keeping ahead of the "next thing" is key--key to quality of life. Sue watched me and her son plant her tulips for her yesterday (yes--we're very late, but I think they'll be OK--ha). She loves to garden, and I know if she had the energy, she would have been right in there with us. Instead she watched because she was too tired. I know she would be feeling better today if she had taken another course in August.
As someone who is watching a friend go through this, her friend across the street, I would say to others who are experiencing these same issues: consider quality of life, be adaptive, don't wait, get what you need before it becomes a big emergency.
Having said that, I will conclude by saying that I honor Sue's path, I honor the decisions she's making. They might not be the ones that I would make (or maybe I would, I can't know that), but this is the way she's choosing to deal with her ALS, and I want to be there for her any way that she finds helpful. Sue's struggle is nothing short of heroic. I'm humbled to be a part of it, even from across the street.
Blessings to you all,
Bernadette
Bernadette, Sue is lucky to have such a good friend as you. Your comment's tell me that you are more in touch with this disease than so many others. To say that you didn't agree with Sue's decision shows how much you care for her. Then to admit that you could in no way understand what she (we PALS) is going through tells me that you have really thought about the disease and Sue's daily struggles. You are correct in saying that unless its happening to you, you can't FULLY feel it. I have lost the use of my arms and legs and now my neck is fading along with my breathing. Think about the number of times in one day that you unknowingly scratch an it, wipe that sleep out of your eyes, shift in your seat or in bed... You get the picture . All of these itches and discomforts don't go away with the dx, no you just learn to ignore them. To me the one word that can describe this feeling is frustration. That is why I personally have chosen no feeding tube no vent. See my comment's on the bi-Pap use for another realistic view from a PAL. Like what do I do when the bipap comes off of my nose and everyone else is in bed? This may be too real for some to read, for that I apologize. But this is reality, unfortunately for thousands of PALS. This is why I have chosen not to prolong this journey. It sure was refreshing to here your so involved with Sue that you understand it so well. I hope that I was able to give you and others just one more perspective. God Bless You, Tony
Jeeze, Tony, your reply to my post made me cry. All I know is that this idiot hellish disease could be affecting me just as easily as it's affecting my friend Sue.
Your story is not "too real," from my point of view. Instead, it's another piece of the puzzle that helps me to understand what this is all about. Those for whom it's too real won't read it; those who need to read it will thank you for posting another truth.
Have you been to the website "Patients Like Me"? It's a place where you can enter your symptoms and treatments into a database. I think if I had this miserable disease, that's one thing that I would want to do--be part of a database that just might help with finding therapies or a cure. If you don't know them you can find them at http://www.patientslikeme.com. There are a lot of folks at that site who also post on this one. Just one big happy family. (grin)
Please keep posting. God Bless.
Bernadette
Sue
I didn’t want a feeding tube but I had lost 60 LBS. It is scary .
And my breathing was going down. So I said OK.
I am glad I got my feeding tube it help me get my strength back .
My breathing was better to . I use a BI-PAP but I don’t keep it on all night
it’s just hard for me to sleep with it I wake up every hour.
But I do put it on tell I wake up than I take it off and I wear it during the day .
Just the little bit I wear the Bi-Pap it help’s me.
KJ
Kay,
Thanks much for your comment. It's hard to know what to suggest for other people, and it really helps to hear other people's stories. I think my friend Sue is starting to think about both the feeding tube and BiPAP in a different way.
Someone told her that the feeding tube is an intervention, something that will help her to keep stronger. It's also helped her to look at the feeding tube as a convenience, so that she can continue on with a good quality of life. If it takes only 20 minutes to use the feeding tube, vs. 2 hours to eat a meal, then she can spend 20 minutes and then get on with her day. I think it's helped her to hear that.
Sleeping, too, has been very hard for her, and I think now she's interested to hear how other people are being helped by using the BiPAP.
God Bless you. Keep posting!
Bernadette
I have not had to use a bipap. My progression is very slow and the doctor is trying to decide if I may have another form of motor neuron disease. I found all the information very helpful in case I will have to use the bipap.
My sister is in her 4th year with ALS and the Bi-pap combined with the air concentrator has bought her the last 8 months of life. She is on it 24/7, except when she eats two 20 minute meals a day. She has aide service round the clock, as she lives alone. Then I do all the aide scheduling and paperwork for her and her son shops and does the monthly bill-paying of rent and utilities. The money comes from her monthly Medicaid spenddown, and Medicaid (which she got after we went through her life savings). Her wish is to stay at home until the end. Do you have a mask that only covers your nose and not your mouth? It took a few tries to get her the right mask, but now it is very comfortable and does not terrify her like the one that covered both her mouth and nose. She has quadriplegia now, but can swallow, talk, and move her head some. The aides (or whoever is visiting) can easily adjust the mask when necessary. She also used some Ativan and morphine to calm her the first several tries, as it was very terrifying for her, as you mention, to not be able to move something on her face, and the first ones they tried covered both her nose and her mouth. We keep finding that many professionals have never dealth with a PALS before.
Grace to you, my friend.
Sincerely,
Barb
hi all,
bi-pap is an excellent assistive device.i've been on bi-pap now 13 years and the past 6-7 years 20 hours a day.i'm always feeling fresh as a daisy.at night the o2 generator is on and attached into my hose circuit together with a great humidifier.i feel best using the resmed swift nasal pillows because of the direct input.
my bi-pap has full auto back-up and spon.time.i may some time in the future need a trache,but that means quality of life.any way... i hope this helps and best of luck .we're all in this together,with crazy a.l.s.
keep the faith,never give up hope and keep smiling :)
hugs and smiles :) :) :)
Hi everyone!
My brother of 12 years with ALS used the bipap machine. He did not like it he thought he was going to choke. I know if he would have used it he would not have had to had the trachea as soon as he did.
If you have the chance to use the machine use it, it will help you.
God Bless and I will pray for you.
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