Old 05-09-2009, 11:26 PM #1 (permalink)
kelly's Avatar
Senior Member
 
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Interest: My sweet hubby has ALS!
Posts: 672
kelly is on a distinguished road
kelly kelly is offline
Senior Member
kelly's Avatar
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Interest: My sweet hubby has ALS!
Posts: 672
kelly is on a distinguished road
Default Lung capacity

I was curious to know at what percentage of lung capacity..people have been recommended to go on a vent? My hubby is at 52% lung capacity when he is measured at the ALS center. He has stayed consistent for 6 months..thank goodness. So worried every time we go to the center that we will see a decrease. Looking for some input.
Thanks, Kelly
kelly is offline  
Old 05-10-2009, 03:09 AM #2 (permalink)
Member
 
Join Date: 2008
City: London
State: England
Country: UK
Diagnosed: 03/2008
Interest: I have been diagnosed with ALS.
Posts: 441
Jennifer51 is on a distinguished road
Jennifer51 Jennifer51 is offline
Member
Join Date: 2008
City: London
State: England
Country: UK
Diagnosed: 03/2008
Interest: I have been diagnosed with ALS.
Posts: 441
Jennifer51 is on a distinguished road
Default

My FVC dropped from 78% to just 49% in a matter of months...(but I did have a chest infection last time it was tested).. The London chest hospital I attend, say that once fvc gets somewhere around 50% that a sleep study needs to be done. I am having that next week with follow on tests,,,will update on what they suggest. I dont know if other hospitals use the same criteria.
Jennifer51 is offline  
Old 05-10-2009, 10:22 PM #3 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,030
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,030
Al is on a distinguished road
Default

I've heard that around 30% you're in rough shape. I and a lady friend are at 44 and 46 and just use Bipap at night.

AL.
Al is offline  
Old 05-10-2009, 10:36 PM #4 (permalink)
BethU's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
BethU BethU is offline
Extremely Helpful Member
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
Default

Kelly, I asked a knowledgeable source that question, and she said 20%, then amended it to "maybe 30%."
BethU is offline  
Old 05-10-2009, 10:42 PM #5 (permalink)
joelc's Avatar
Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,803
Blog Entries: 17
joelc is on a distinguished road
joelc joelc is offline
Moderator
joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,803
Blog Entries: 17
joelc is on a distinguished road
Default

From personal experience I would agree with the 30% recommendation. I got my trache and vent when I was at about 35%. I wanted to be proactive and not get it done in ER. It provided to be the right choice as my recovery was only hours instead of months.
joelc is offline  
Old 05-10-2009, 10:49 PM #6 (permalink)
kelly's Avatar
Senior Member
 
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Interest: My sweet hubby has ALS!
Posts: 672
kelly is on a distinguished road
kelly kelly is offline
Senior Member
kelly's Avatar
Join Date: 2006
City: saratoga springs
State: ny
Country: US
Interest: My sweet hubby has ALS!
Posts: 672
kelly is on a distinguished road
Default

Thank you for all of your feed back. I will just hope..pray that he progresses slowly, as his wishes are not to vent. Which of course breaks my heart. I admire and respect all of my forum friends that have made the choice to vent. Maybe he will change his mind if and when the time happens. Thanks again for all of your help.
kelly is offline  
Old 05-11-2009, 01:33 PM #7 (permalink)
John1's Avatar
Very Helpful Member
 
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,034
John1 is on a distinguished road
John1 John1 is offline
Very Helpful Member
John1's Avatar
Join Date: 2006
City: Newfoundland
State: NL
Country: CA
Diagnosed: 10/2000
Interest: ALS dx in 2000; changed to UMN-dominant in 2012
Posts: 1,034
John1 is on a distinguished road
Default

Quote:
Originally Posted by kelly View Post
Thank you for all of your feed back. I will just hope..pray that he progresses slowly, as his wishes are not to vent. Which of course breaks my heart. I admire and respect all of my forum friends that have made the choice to vent. Maybe he will change his mind if and when the time happens. Thanks again for all of your help.
Lots of people do change their mind when the time comes. Do you think he would be interested in reading some of Joel's posts? He puts forward a very positive view of life with a vent. I remember in those pre-ALS days when I couldn't imagine having to live life with a wheelchair. Well, I have adjusted to life with one very well and hardly give it a second thought (except when it breaks down). Technology has provided us with many excellent ways to help us cope with this disease. Now if medicine could just do the same.
John1 is offline  
Old 05-11-2009, 02:24 PM #8 (permalink)
joelc's Avatar
Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,803
Blog Entries: 17
joelc is on a distinguished road
joelc joelc is offline
Moderator
joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,803
Blog Entries: 17
joelc is on a distinguished road
Default

Quote:
Originally Posted by kelly View Post
Thank you for all of your feed back. I will just hope..pray that he progresses slowly, as his wishes are not to vent. Which of course breaks my heart. I admire and respect all of my forum friends that have made the choice to vent. Maybe he will change his mind if and when the time happens. Thanks again for all of your help.
I really wish there was something I could say, or do, to make him change his mind about a vent. I have known too many PALS that said they would not vent then change their mind on their death bed. Then their recovery is months and not enjoyable at all because they usually have pneumonia at this point.
If you can convince him to get it done before you end up in ER there is no recovery time. Another problem in waiting is that you are not trained, or setup at home, to take care of him, this leads to a very uncomfortable scramble to get everything in place for his return home.
joelc is offline  
Old 05-11-2009, 02:57 PM #9 (permalink)
gbrown's Avatar
New Member
 
Join Date: 2008
City: Bassett
State: Virginia
Country: US
Diagnosed: 07/2006
Interest: I have been diagnosed with ALS.
Posts: 77
gbrown is on a distinguished road
gbrown gbrown is offline
New Member
gbrown's Avatar
Join Date: 2008
City: Bassett
State: Virginia
Country: US
Diagnosed: 07/2006
Interest: I have been diagnosed with ALS.
Posts: 77
gbrown is on a distinguished road
Default

When I was first diagnosed in 06', my FVC was 35%. My doctor put me on a BiPap and I started doing breathing exercises. My FVC went up to 48% and at my last visit in January it was 40%. I have stepped up my breathing exercises since January and my next clinic appt. is May 20th. I hope it will come up.
gbrown is offline  
Old 05-11-2009, 07:51 PM #10 (permalink)
Senior Member
 
Join Date: 2008
City: Anaheim
State: California
Country: US
Diagnosed: 08/2008
Interest: I have been diagnosed with ALS.
Posts: 530
tmasters is on a distinguished road
tmasters tmasters is offline
Senior Member
Join Date: 2008
City: Anaheim
State: California
Country: US
Diagnosed: 08/2008
Interest: I have been diagnosed with ALS.
Posts: 530
tmasters is on a distinguished road
Default

Can somebody explain muscle strengthening to me in ALS?

My understanding has always been that exercise is limited to range-of-motion, and that strengthening exercises do more harm than good.

Yet for breathing muscles, this doesn't seem to be true. Can we really use breathing exercises to strengthen the diaphragm? Or is something else going on here?

I've been wondering about this for a long time.

-Tom
tmasters is offline  
Old 05-11-2009, 08:13 PM #11 (permalink)
BethU's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
BethU BethU is offline
Extremely Helpful Member
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
Default

Hey, Tom ... glad to see your post. I've been wondering where you've been....

Interesting question. It would be great if we could strengthen the diaphragm through exercise. (Spirometers?)
BethU is offline  
Old 05-11-2009, 08:42 PM #12 (permalink)
DgtofTNfan's Avatar
Senior Member
 
Join Date: 2009
City: Louisville
State: KY
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 566
DgtofTNfan is on a distinguished road
DgtofTNfan DgtofTNfan is offline
Senior Member
DgtofTNfan's Avatar
Join Date: 2009
City: Louisville
State: KY
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 566
DgtofTNfan is on a distinguished road
Default

Add me to the interested party for pulmonary exercises.

My Dad was advised to do breath stacking as outlined in this thread... Breathing exercises: Stacking & Hyperinflation and it really helps him with his weak cough.

He also has a handout for posture exercises that are suppose to help the intercostal muscles by expanding the ribs and giving the lungs more room to inflate. It looks rather simple and I can get a copy if anyone is interested. The PT noted Dads posture impacts his breathing.

My Dad's pulmonary doc was not pro spirometer or inspiratory muscle trainers explaining that they require him to expend too much energy to use regularly however I read that other people are using them? I am interested in others opinions as well.
DgtofTNfan is offline  
Old 05-11-2009, 11:01 PM #13 (permalink)
Phil M's Avatar
Senior Member
 
Join Date: 2008
City: Snellville
State: Ga
Country: US
Diagnosed: 5/2008
Interest: I have been diagnosed with ALS.
Posts: 623
Phil M is on a distinguished road
Phil M Phil M is offline
Senior Member
Phil M's Avatar
Join Date: 2008
City: Snellville
State: Ga
Country: US
Diagnosed: 5/2008
Interest: I have been diagnosed with ALS.
Posts: 623
Phil M is on a distinguished road
Default

I think its more along the lines of stretching your lungs.
Phil M is offline  
Old 05-12-2009, 01:23 PM #14 (permalink)
gbrown's Avatar
New Member
 
Join Date: 2008
City: Bassett
State: Virginia
Country: US
Diagnosed: 07/2006
Interest: I have been diagnosed with ALS.
Posts: 77
gbrown is on a distinguished road
gbrown gbrown is offline
New Member
gbrown's Avatar
Join Date: 2008
City: Bassett
State: Virginia
Country: US
Diagnosed: 07/2006
Interest: I have been diagnosed with ALS.
Posts: 77
gbrown is on a distinguished road
Default

Here's the breathing exercises I do each day:
1. Use a nose pin on my nose and breathe in deeply and see if I can blow out for 20 seconds.
2. 10 reps on the "Ultrabreathe" Respiratory Trainer.
3. 10 leg lifts,
4. Breathe 5 deep belly breaths and transfer to the lungs and hold for 5 seconds.
5. Blow out cheek 10 times and then hold for 10 seconds on each side.
6. 10 leg lifts.
7. Do 5 breath stacking exercises and hold in lungs for 5 seconds each.
8. Work mouth from side to side 10 times and hold on each side for 10 seconds.
9. 10 leg lifts.
10.End with 10 more reps on the Ultrabreathe Respiratory Trainer.
I do this set of exercises at 6 to 8 times a day.
Gordon
gbrown is offline  
Old 05-12-2009, 02:30 PM #15 (permalink)
BethU's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
BethU BethU is offline
Extremely Helpful Member
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
Default

That is great information, Gordon. Thank you for posting that ! (Can't blow out cheeks or work mouth side to side any more, but I'll try! )

The Ultrabreathe works on resistance to "strengthen muscles" so I think I'll check with my pulmo before starting it. But if he gives the go-ahead ... I'll sure go ahead. Your results are remarkable.



Speechless in LA
BethU is offline  
Closed Thread

Tags
age, als, lung capacity, vent, worried



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
FVC forced vital capacity score mysisterskeeper General Discussion About ALS/MND 5 09-21-2012 02:22 AM
Lung Cap @ 30% ksbigbrother General Discussion About ALS/MND 12 08-20-2011 09:38 PM
Lung Weakness schavez500 People With ALS - "PALS" 14 02-28-2011 02:51 AM
Dad & Lung Capacity (FEV) Test JennB329 Current Caregivers (CALS) 1 09-21-2010 04:22 PM
Forced Vital Capacity and Vent Dave C Current Caregivers (CALS) 4 01-12-2010 06:50 AM
Lung function Blues1986 General Discussion About ALS/MND 2 12-12-2009 11:34 PM
lung function Jeannie Current Caregivers (CALS) 18 09-07-2009 08:18 PM
Vital Lung Capacity question nwafriend General Discussion About ALS/MND 4 06-27-2008 10:45 PM
Lung Cancer or ALS? troy General Discussion About ALS/MND 20 09-08-2007 10:18 AM
Lung function tests Da Boys General Discussion About ALS/MND 0 05-30-2007 05:19 PM


All times are GMT -5. The time now is 10:07 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