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Old 05-09-2009, 11:26 PM   #1 (permalink)
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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.
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Old 05-10-2009, 03:09 AM   #2 (permalink)
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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.
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Old 05-10-2009, 10:22 PM   #3 (permalink)
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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.
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Old 05-10-2009, 10:36 PM   #4 (permalink)
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Kelly, I asked a knowledgeable source that question, and she said 20%, then amended it to "maybe 30%."
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Old 05-10-2009, 10:42 PM   #5 (permalink)
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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.
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Old 05-10-2009, 10:49 PM   #6 (permalink)
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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.
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Old 05-11-2009, 01:33 PM   #7 (permalink)
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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.
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Old 05-11-2009, 02:24 PM   #8 (permalink)
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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.
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Old 05-11-2009, 02:57 PM   #9 (permalink)
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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.
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Old 05-11-2009, 07:51 PM   #10 (permalink)
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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
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Old 05-11-2009, 08:13 PM   #11 (permalink)
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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?)
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Old 05-11-2009, 08:42 PM   #12 (permalink)
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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.
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Old 05-11-2009, 11:01 PM   #13 (permalink)
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I think its more along the lines of stretching your lungs.
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Old 05-12-2009, 01:23 PM   #14 (permalink)
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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
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Old 05-12-2009, 02:30 PM   #15 (permalink)
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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

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