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Al

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I've been on it for sleeping only or lying down for 2 1/2 years.
AL.
 

anne

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My mom has been experiencing breathing problems since the beginning of June. She has been on a steady decline. She was just recently given a bipap machine and did try the nasal mask which she really hated. It was too difficult for her to put it on and take it off. She felt the air was blowing in her eyes and therefore she would not use it at night. She now has the nasal pillows. What a difference. This is her sixth night sleeping with it. It appears that her breathing during the day is not laboured like it has been. She is still unable to exert herself because her breathing will get very loud and difficult to breath. It is sad to watch her because she is still very mobile and her fine motor skills are excellent. However, the bipap machine might buy her some more time. I encourage everyone to give it a good shot. It may take sometime to get use to but I think it might help in the long run. God Bless everyone on this site. Anne
 

pamwagg

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Friend was DX
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Hi Pat,

I don't know, of course, but my friend Joe is on a vent right now and they are trying to wean him OFF it during the day, afraid he will get too used to it early and not be able to breathe without it before he truly needs it. I wonder if using the bipap early might not be like that: if you rest your lungs, you might be letting them -- more your diaphragm muscles -- get deconditioned rather than actually being restored. Since a muscle works better the more it is used, it only makes sense to use your own muscles to breathe for as long as it is possible before resorting to a machine.

Remember, though, that this is only my opinion, and based on what I know about vents and breathing. Hope my two cents helps you make some decision, but that you base it on a lot of two cents from everyone!

My best to you,

Pam W
 

Al

Moderator emeritus
Joined
May 25, 2004
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8,083
Reason
PALS
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CA
State
On
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NW of Toronto
Yes muscles work better the more they are used in a person that has the ability to regenerate muscles which ALS patient's don't have. In our case if you overuse it you lose it. Resting the lungs and diaphram is a good thing for breathing compromised patients.
AL.
 

patricia1

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Joined
Sep 18, 2006
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1,171
Reason
PALS
Diagnosis
7/1999
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US
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newjersey
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lopatcong NJ
Thank you Al. That clear it up for me. I found the Bipap very comforting for me .Pat
 

helper

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Mar 3, 2006
Messages
25
My mother in law was told that if she used it too early she would become dependant on it...i didn't understand why they would tell her this..
Al and others who are taking/took an anti anxiety medication before using the bipap...do you still need to take a drug or do you get comfortable with the machine over time?

Jodie
 

janf

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Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
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tifton
For Anziety And Claustophobia Ativan Works Great For Me I Woul D Not Be Able To Stand The Mask Or My Life Wthout It . My Medicare Rental Supply Brought Severall Different Masks Until I Was Comfortable. One Of My Masks I Was Wearing Up Side Down Lol
Jan Franks
 

anne

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Messages
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CA
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ontario
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unionville
I have read alot of people taking anti-anxiety medications but from my understanding that medication can supress your breathing and is not a wise idea to be taking it if you have breathing problems. Can someone clarifiy this for me. Anne
 

Al

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Joined
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8,083
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
My doc's say 1mg or even 2mg won't hurt me but more than that of Ativan is not good becase of being too relaxed sleeping. I'm about 215 lbs. so that could be a factor too, the weight of the person as well as their breathing numbers.
Jodie. Was it an ALS experienced Pulmonologist that told your mom in law that?
 

JACKIEMAX

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TN
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Baxter
Bipap And Its Importance

I Will Not Take The Time To Go Back And Reiterate My Husband's Dx With Als, Etc., As Most Of You Steady Posters Already Know It. His Breathing Capacity Has Gone From 105 In Feb. To 55 In July. He Has Been On The Bipap For Several Months Now, And It Has Saved His Life. Is He Uncomfortable? You Bet He Is! But He Wants To Live Every Moment The Good Lord Will Allow.

He Went Back To The Als Clinic In Nash. Friday, And They Do Not Recomment The Trach And Vent For Him. You Have To Have Round The Clock Caregiving With The Vent At About $20 An Hour, And Who Of Us Can Afford That?

I Am His Only Caregiver So The Dr At The Clinic Is Having His Bipap Changed From 'helping Him Breathe' To 'breathing For Him'. This Will Change Everything For Him, It Will Probably Have To Be On 24/7 And No Talking Etc.

The Dr. Also Told Him To Have A Feeding Tube Surgically Inserted Within The Next 3 Wks Altho He Can Still Eat Easily On His Own At This Time, But Since His Breathing Capacity Is So Low, 55, And Dropping Rapidly, They Say He Could Not Survive The Surgery In Another Month.

Does This Answer Anyone's Questions? To Those Of You Who Wrote In To Say The Als Patient In Your Family Won't Use The Bipap Bec. They Dont Like It, Tell Them It's Better Than Dying.

My Heart Breaks A Little More Each Day Bec. I Know My Husband Cannot Last Much Longer.

Jackiemax
 
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