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Mary Helen Barr

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I was wondering how low the FVC (forced vital capacity, I think) can go. When my father was diagnosed @ 7 years ago, he was at over 100%. He is now at about 50%. He has difficulty breathing, also, because his head hangs and bends his windpipe. Lying down he is pretty short of breath. I know he doesn't breathe very deeply. When he had his last test, nothing was mentioned about it, just the number. What's next? I take care of him every day, and he often seems OK in that regard, but other times he is uncomfortable. I can't imagine him wearing a mask, because his nose is always stuffy, and he wouldn't be able to talk with it on. I have a C-PAP myself, so I know a little bit about what that feels like. However, I'm sure he would try whatever his ALS doctor suggests. Does anyone have any advice about this?
 

Carolan

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Hi Mary Helen,

I am surprised that no one mentioned BiPap if his FVC level was around 50%. That's when my mother was prescribed BiPap. You might ask the doctor if this is something they are considering for him because it would really help him breathe better, give him more energy, etc. The problem with not breathing fully is that there can be a buildup of carbon dioxide, which can cause severe confusion and blackouts. If your father is reluctant to use a breathing assistance device, you might explain to him what can happen without it (especially the confusion bit). He would probably use it just at night to begin with, and then he wouldn't be wearing a mask during the day. Also, there is a current study being conducted to see if early BiPap use among ALS patients extends their life (and prolongs the progression). Giving the diaphragm and intercostal muscles a rest at night seems to help patients during the daytime as well. Good luck, and please keep us posted about how things go. I hope that you (or he) will talk with his doctor about the possibility of BiPap.
 

joelc

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He definitely would benefit from a bipap so please talk to his doctor.

My FVC was at 30% when I finally got my bipap, now it has come back up to 50% and I think it is from giving my diaphragm muscles a rest at night. I also had sinus problems and have breathed through my mouth since my teenage years. It did not take long using the bipap to open up my stuffy nose, now it is fine. Your FVC can go all the way down to 0%, so a bipap is a life saver.......literaly. Good luck.
 

Al

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I was around 80-85% when I got my Bipap but couldn't get my breath lying down. That was in Jan. 05. I'm around 60% FVC now.
AL.
 

John1

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MHB and others experiencing breathing difficulties,

There is a possible alternative to bipap and other forced breathing devices and that is the diaphragm pacer that was pioneered by Dr. Onders at Case Western Reserve in Cleveland, Ohio. It been used for about 3 years for ALS patients and is one of the few developments that has proven out in ALS research since Rilutek. Here is a link to an old paper (2005) but since then many PALS have received the implant and are reporting good results in prolonging their breathing.

http://www.medscape.com/viewarticle/503538

By the end of 2006 he had implanted 14 PALS and reported good results.
http://www.mda.org/research/view_ctrial.aspx?id=128

On the weekend I received a phone call from a friend with ALS who had travelled to the US to attend the ALS-TDI workshop in Boston where Dr. Onders reviewed more current stats on the device. He was very upbeat about the results after listening to the presentation. I believe 50% FVC is a minimum to implant the device but don't quote me on that.

Mary, since your father is a slow progressor, I would think he would be a good candidate for the pacer.

-John
 
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