Question on Trilogy

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KimT

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This question was brought up at a meeting of PALS. If you start BiPAP or Trilogy too soon, will it harm you in any way? One doctor said you should wait until your FVC is below 80 and another said you can start as soon as you have a diagnosis because it will take awhile to get used to it. He also said you could set the settings very low so you are doing most of the work.
 
Do some Searching.

There was recent discussion about early bipap being beneficial.
 
The pulmo who treated Steve at the VA was doing several studies on this very thing. He believed, anecdotedly and based on research, that it is helpful because the expansion helps to preserve lung function. Steve was encouraged to use it whenever he could because they felt it helped preserve the muscular function of the diaphragm and accessory muscles.
 
Actually, search on patoyeah's posts. He dropped a bunch of links that touch on this.
 
My understanding of this question (and I don't have a medical degree, but am giving MHO) is that unlike the DPS (diaphragmatic pacer system) which was trying to stimulate the diaphragm to contract and has been shown in some cases to hasten progression, using the trilogy allows you to rest your breathing muscles while letting your lungs inflate and empty fully.

This gives you better QOL as soon as your breathing is compromised, but does not cause the muscle to work harder which may hasten progression (just like over-exercising may).
 
Tillie,
That makes sense. I have to go back and look at the studies I found once again. Breath stacking is actively inflating lungs, whereas using a breathing machine is passively inflating lungs. I'm wondering if the former is not as good as the latter. I thought I had it all figured out and have been actively doing breathing exercises to increase my lung capacity.
I'll revisit the studies.

This is a very simple site with videos of breath stacking techniques. I do have a manual bag and cough assist device.

http://amyandpals.com/als-and-breathing-101/
 
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Kim I believe the point is over-exercising.

Breath stacking can be done too much, but some breath stacking I think has been shown by PALS here to be really beneficial when you are still breathing ok but there is some loss of function.

I feel that while something can be done, doing it is good, so long as you don't overdo, or do to the point of fatigue that takes more than half an hour to recover from.

So if you were to do your breath stacking, then find yourself exhausted for the next couple of hours, maybe you are doing too much. If you do some breath stacking and feel really good after, then maybe you are doing just the right amount.

Going on bipap for a while increases your energy and general feeling better in yourself - I think this shows that it is doing good.

Again, this is JMHO.
 
As discussed before, it's not a number but symptoms that signify a need for respiratory support. I don't agree with "at diagnosis" unless there are indications, as there are enough things to set in place that will affect QoL as well. But apart from that the idea of starting as early as the dz suggests makes sense as with all the other tools in the toolbox.
 
Ok finally got the trilogy and used it 3/4x so far. Even with a big beard no air leaks and getting use to it quickly.
I asked for a cough assist Mach and the va sent over this wrap around contraption that vibrates like crazy. The tech person said this is what dr ordered to help break up congestion.
I said " WHAT" your kidding me!
Anybody! Some help here. Ever hear of this.
I tell ya these distributors of med Gagets just milk the va cash cow. This thing rents for 1500 @ mon. Dam. Sorry tax payers.
I still do want the cough assist. Any way trilogy is all good.
Love ya sorry so long post chally
 
It is a chest compression vest. My son had one with pneumonia. Used primarily for obstructive lung conditions not restrictive . Als is restrictive
 
So glad you finally got the Trilogy chally and that it is going so well. Yay!
 
Chilly, "the Vest" is used some in ALS, but with the cough assist. First, you loosen the gunk, then get rid of it. But if the gunk is loose enough that the CA works on its own, store the Vest. So yeah, keep asking for the CA if you want to try the theory out.

Steph, there are both obstructive and restrictive aspects to respiratory impairment in ALS. As with all the other sx, the ratio varies and in late dz the pattern usually becomes primarily restrictive.
 
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Yep some do use a vest, I was talking a CALS about theirs only the other day.

It's a minority though and I don't know any experienced CALS who really use them or used them for very long.

The cough assist however is well documented as worthwhile and effective.

I think at 1500 a month I would not just put it in a cupboard but send it back when the cough assist arrives. In the meantime only use it if you feel it does you any good, don't feel obligated to mess with it!
 
I have both the cough assist and Trilogy in my closet. I'm going to the Gulf this week and will start when I get back.
 
I didnt know they were used for als unless there was copd or some other complicating factor. Mostly I had heard asthmatics, pneumonis, copd patients use them.
 
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