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tripete

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PALS
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12/2014
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Lancaster
As I have noted in another post my breathing seems to be declining. I can still walk and use my hands but the fatigue is increasing and there is definite increased weakness.

What can I expect to happen?

I am not asking for a time frame but to understand the stages my breathing will go through. Currently I use my BiPap at night and have started using it during the day time as it is the only time my breathing feels comfortable. I have a lot of mucus and phlegm.

Will I end up with the BiPap all the time if so then what?

As always I appreciate your help and candid answers.
 
Some of us die in our sleep fairly unexpectedly. A shock to our families I suppose but most will come to see it as a blessing. But otherwise if nothing else happens our breathing grows progressively weaker requiring assistance 24/7, and adjustment of the settings. If you decide no vent then eventually the bipap is not enough. There is medicine to help with comfort. Talk to your wife and other loved ones about things in advance
 
Can you explain the vent?
 
Basically a vent bipasses your diaphragm so the death of the nerves there are not important anymore. The problem
with a vent is it does nothing to stop the disease (plus you need someone with you 24x7 in case something happens). If a tube comes out i am told it is a particularly gruesome way to die. Then there is the cost. Eventually as the disease progresses you will become locked in-unable to move any voluntary muscle even including your eyes. So at that point you have to ask is life really worth it.
There are opinions from both sides here, although from what Ive found, some of the strongest vent supporters have eventually chosen to go off the vent and die.
I can only assume their life got to a point where it wasnt worth it anymore.
 
Not so much 'bypasses' as 'doesn't rely on'. The assumption is that your diaphragm isn't/cannot function.

Yes the locked-in condition is frankly terrifying. You can allow for it in your Final Directive as I noted in this string: https://www.alsforums.com/forum/general-discussion-about-als-mnd/27668-what-expect-vent.html

Diane H, one of our senior PALS who has been vented since 2004 discusses the subject extensively on her website at Vents and Trachs

Interesting note in Diane's discussion: only 5% of PALS in the US choose to vent while 50% of Japanese do.

Tillie tells us that it's not an option down under.

I would also recommend reading Diane's commentary regarding cost.

It's an important decision; arguably one of the most important. Make sure you have considered all aspects and not just the emotional one.
 
I too have some mobility left but for the first time yesterday I had to use the bipap during the evening. The night before I had slid down the bed and did not have the energy to get myself propped back up, I felt myself fading in and out (fainting) and honestly thought that was that, I fear the use of the bipap will become more and more needed now and not just worn at night. They don't vent in the UK (well not very often) because of cost I am sure so I can only hope that I go peacefully in my sleep
 
Having the trach tube come out is an easy fix unless you are alone; just shove it back in! Hose disconnects are far more common which is why you need someone nearby and a call button in case they don't hear the vent. If either of these happened and I died, I don't see how it would be a particularly gruesome way to die, probably less so than drowning or any other form of suffocation such as ALS itself!

While it is true that many vent users opt to have the vent disconnected, I see this as a huge plus! They can live for months or years free from struggling to breath, and when other progression of ALS makes life intolerable, arrange to die painlessly when they are ready, and not have to wait for a loosing battle with pneumonia or something else to eventually turn them loose. That is a huge comfort to me!
 
> They don't vent in the UK (well not very often)

Perhaps if you 'friend' Dr. Hawking on Facebook? ;^}
 
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When things get hairy, and you're in danger of dying (perhaps because breathing is not working, or the machines are not reliable) then you can request that your hospice providers (at home, perhaps) provide you with "crisis care."

When my PALS became bedridden, then her CO2 increased and we needed someone with her at all times. At that point, we called a hospice service to come into the home and provide crisis care. They gave us nurses 24 hours a day.

Of course, the nurses had never seen a paralyzed patient. But in our case, my children and I were so well experienced that we simply told the nurses to follow our instructions. Having the nurse in the room simply allowed me to sleep from time to time.

My PALS, Kristine, realized that she would soon be in the Totally Locked In State, and made it clear she did not want to live like that. Also, whenever the CO2 would build up and she would feel "air hunger," my PALS would refuse oxygen, and instead request morphine to get rid of the air hunger. Krissy wanted no tubes or vents but allowed a catheter to drain into a bag under the bed.

I "modified" a dress by cutting out the backside, and dressed her in a dignified manner, and put pleasant coverings on her bed so she looked good and not like a dying patient in a hospital.

Within a couple of days, Krissy's eyes were unresponsive. She was in the totally locked in state for half a day when the bedside nurse noted that Krissy was dying. I don't think Krissy ever knew it, herself. She was quite happy on morphine, unafraid and not in any distress. We called the family around her bedside and held her hand as her heartbeat faded away. It was all very dignified.
 
My heart goes out to you Pete. I can't imagine how difficult this is for all the PALS out there :'(
 
> They don't vent in the UK (well not very often)

Perhaps if you 'friend' Dr. Hawking on Facebook? ;^}

of course Dr Hawking is not on a ventilator, he has a trach tho.
 
gosh when that post I just did, (quoting Greg so it's HIS fault) comes out of mod I'll be examining carefully to find the trigger word!
 
It should be obvious to both you and Greg it is a word discussed multiple times!
 
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