Old 07-19-2010, 03:42 PM #1 (permalink)
New Member
 
Join Date: 2010
City: Jackson
State: TN
Country: US
Diagnosed: 02/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 50
NHAMM is on a distinguished road
NHAMM NHAMM is offline
New Member
Join Date: 2010
City: Jackson
State: TN
Country: US
Diagnosed: 02/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 50
NHAMM is on a distinguished road
Default Weakness and the use of bipap machine

The past few days my mother is feeling weaker and weaker. We have tried to encourage her to use the bipap machine but she said it bothers her sinus and she does not like it. She said she does not have trouble breathing and that she does not think that is what is causing her weakness.

I have done some searching but I am looking for words of encouragement I can show her that would show her that this could make her feel better. Does anyone have anything they can share with me regarding this.
NHAMM is offline  
Old 07-19-2010, 06:57 PM #2 (permalink)
Extremely Helpful Member
 
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,204
brooksea is on a very distinguished road
brooksea brooksea is offline
Extremely Helpful Member
Join Date: 2006
Country: HM
Interest: Other
Posts: 5,204
brooksea is on a very distinguished road
Default Re: Weakness and the use of bipap machine

Does it have a humidifier on it? She could be getting dried out. If she does have humidifier, is the water being changed regularly? (no offense) My husband will go days without using his and then decide to use it and the water will have gunked up and smell bad. That can affect your sinuses.

The BiPap really does give my husband more energy, but he usually takes it off after several hours. If he goes days without using it, he suffers.

Do you know what her FVC is?
brooksea is offline  
Old 07-19-2010, 08:42 PM #3 (permalink)
rose's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
Default Re: Weakness and the use of bipap machine

I honestly don't know how anyone who needs a bipap can be comfortable NOT using it! Yes, it gives me energy, better than anything else can. I use it at night (all night, can't breathe flat without it) but also, for a nap in the afternoon, I put the foot of my bed way up, so my knees are above my heart, put the mask on, and I'm out like a light. Days I don't do this, I can tell the difference.

Like CJ said, check the humidifier, make sure its turned up high enough, and that the water is fresh, and is distilled, not tap water, as this is drying. Also, perhaps her settings for how hard the machine is blowing needs to be adjusted down. At first, mine were too high, and it bothered my nose tremendously.

Good luck!
rose is offline  
Old 07-20-2010, 09:32 PM #4 (permalink)
New Member
 
Join Date: 2010
City: Jackson
State: TN
Country: US
Diagnosed: 02/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 50
NHAMM is on a distinguished road
NHAMM NHAMM is offline
New Member
Join Date: 2010
City: Jackson
State: TN
Country: US
Diagnosed: 02/2010
Interest: I am a family member of someone with ALS/MND.
Posts: 50
NHAMM is on a distinguished road
Default Re: Weakness and the use of bipap machine

Thanks so much for your input. One of my sisters and showed her these and some other things regarding the bipap and she did try this afternoon for about an hour. She did say that after that she has been dizzy off and on. I did read that is a common side effect for that. Any advice on how to help with that? Does she just need to maybe not use as long at first?
NHAMM is offline  
Old 07-22-2010, 10:14 AM #5 (permalink)
rose's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
Default Re: Weakness and the use of bipap machine

NHAMM,

I don't know about the dizziness. It does make me wonder if maybe her settings need to be adjusted (dizziness combined with how she said it can bother her nose) It does take a bit of tweaking for most people to find their happy place with it. You might want to ask the RT who set her up with it.

You may get more success having people read and answer your posts, if you ask questions such as this over on the general discussion forum, or even the PALS one. Some PALS who don't have bulbar involvement still use BiPAP. Even though I'm a Bulbarian, I don't always check down this far on my computer screen to see if there is a new post, especially when using a netbook, I have to scroll down to see the PBP forum. Its just not as active as the others I mentioned.

Good luck!
rose is offline  
Old 07-28-2010, 08:36 PM #6 (permalink)
Senior Member
 
Join Date: 2007
City: Richmondville
State: New York
Country: US
Diagnosed: 10/2007
Posts: 663
Marjorie R. Wilcox is on a distinguished road
Marjorie R. Wilcox Marjorie R. Wilcox is offline
Senior Member
Join Date: 2007
City: Richmondville
State: New York
Country: US
Diagnosed: 10/2007
Posts: 663
Marjorie R. Wilcox is on a distinguished road
Default Re: Weakness and the use of bipap machine

My hubby has never had a humidifier on his Bipap and doesn't get dried out. Here in the northeast our air is probably humid most of the summertime though. In the winter we use a woodstove for heat and have a humidifier on for the air in the rooms. If she says she doesn't have difficulty breathing she doesn't need it anyway I would think. I wonder too if people are washing the mask and hose too much. We sound like pigs, but we don't wash them more than maybe 3 times a year. He never gets sore or has a problem.
Marjorie R. Wilcox is offline  
Closed Thread

Tags
bipap, breathing, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
bipap machine smoochiegal Current Caregivers (CALS) 8 01-16-2015 02:57 AM
The Age Old Question: Perceived Weakness Vs. Clinical Weakness max777 Do I Have ALS? Is This ALS? 30 01-31-2014 02:23 PM
Kind of BiPap machine - need a cheaper option texastracy People With ALS - "PALS" 0 01-25-2014 08:13 PM
For The New People: Perceived Weakness and True Weakness notme Do I Have ALS? Is This ALS? 29 11-07-2012 09:02 PM
weakness in body/weakness in neck/mouth edwards5257 Do I Have ALS? Is This ALS? 9 07-18-2012 06:56 AM
God in the Machine arkallen Other 5 03-24-2012 02:51 AM
bipap machine, understanding Tom's Support Current Caregivers (CALS) 5 12-18-2011 02:34 PM
please donate a BiPAP machine to me (not ALS related) Alas Used ALS Equipment for Sale! 0 11-19-2011 10:23 PM
weakness with bi-pap machine beverly rees General Discussion About ALS/MND 3 05-06-2009 11:03 PM
Do I need to buy a backup BiPAP machine? dbw General Discussion About ALS/MND 18 10-18-2008 11:55 AM


All times are GMT -5. The time now is 05:39 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016