BiPap now needed...

Cherise77

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Jun 18, 2018
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48
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Loved one DX
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07/2018
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BC
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My Dad has his first Respirologists appt today and is now very down as his breathing is not what he was hoping.
His FVC was 66%. He’s having some trouble getting a deep breath laying flat in bed and so she suggested a BiPap at night.
My question for anyone that is willing to share is are there other pALS that have had breathing issues when his only weakness is still right hand/arm?
He is nervous that the disease has jumped from his arm to his lungs when he thought that the lungs being compromised was something that happened last.
Any insight that I can pass on is greatly appreciated.
Thank you!
 

lgelb

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Cherise, breathing problems can occur any time in ALS, and what you describe is fairly common. There is no set order to this, as any of the motor neurons can be damaged.

Getting a BiPAP and staying ahead of breathing problems will improve the quality and possibly the length of his life. I understand why he is down, but I would just reassure him that the BiPAP will help bring the disease more under his control.

Let me know if he needs help with settings, which often require some tinkering.

Best,
Laurie
 

Jimi

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Sep 24, 2019
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43
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PALS
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02/2015
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Cherise,
What you are describing is not unexpected. I haven't been able to breathe without a bipap for about a year and used the bipap for sleeping for about a year before that. I had never used one before that and was very stubborn about starting. Went for months with morning headaches. I feared that this would speed up the weakening of my diaphragm. As time went by it became more and more uncomfortable to breathe on my own and now it's 100% necessary. Waiting and struggling for air did nothing to stop the inevitable, only caused me a lot of suffering. Looking at the bright side of things for your Dad, I am very comfortable with my breathing and have adapted to it very well, so he should embrace the transition. Breathing is nice. As Laurie pointed out, settings will need customized for the best experience. As soon as you find out what machine he is getting, go online and read the manual and if needed how to access the settings. It's not a fun read, but I assure you that learning how to adjust the settings will be much better than relying on someone to do it for you. All the best , Jim
 

nona

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Oct 1, 2018
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228
Reason
PALS
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02/2015
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NH
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Cherise, I was diagnosed in February '15 and was using a bipap by July. I was physically able to work for two more years. I believe that the bipap has been a major part of why I'm still here. My lung function was definitely compromised more quickly than my limbs.
 
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