Old 01-07-2018, 10:09 AM #1 (permalink)
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Default Newly diagnosed

Hi my name is missy, I was diagnosed on Friday December 29 2017, after my 2nd emg and around thanksgiving my speaking and swallowing has been greatly affected I have lost 35lbs, I'm going to the clinic on the 18th of Jan, but part of me feels like I won't make it that long, breathing is terrible and I can't tolerate the bi pap, I'm still able to walk only my left arm and swallowing, breathing, andvoice are affected. I had a rare onset I was told because it started in my shoulder. I have 7 family members pass from als before me, I will be the 8th. I don't want anything to keep me alive longer. I can't do that to myself my daughter or family it's so hard but I wanted to know if any of you think I may be close to the end with these symptoms?
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Old 01-07-2018, 11:46 AM #2 (permalink)
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Default Re: Newly diagnosed

Hi again Missy

We already talked elsewhere but I am so sorry.

It is terribly hard for us to say. We can't see you. Malnutrition and respiratory compromise are often the things that can do us in.

Do you have interest in working on bipap? Laurie is very good at suggesting changes in settings that will make it more comfortable. I know she would be happy to help

Are you getting some nutrition in? I know it is hard but you might feel better. There are lots of suggestions here for smoothies and such

My heart breaks for you
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Old 01-07-2018, 03:38 PM #3 (permalink)
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Default Re: Newly diagnosed

Missy,

I'm very sorry to welcome you here and certainly understand after all your family's losses that you might not want the same path for yourself, and of course it is your choice. But you may owe yourself a little room to process the diagnosis in the context of what you want to accomplish, and that is easier to do when you are not suffering as much physically.

I'd be happy to help you work on tolerating your BiPAP -- a different mask and/or settings often helps--which could give you more energy for whatever you would like to accomplish. And Nikki is right about smoothies, a raw egg, pudding, whatever goes down easiest.

Best,
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Old 01-07-2018, 03:40 PM #4 (permalink)
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I am very sorry to welcome you here, but welcome nonetheless.

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Old 01-07-2018, 04:15 PM #5 (permalink)
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Default Re: Newly diagnosed

Please take Laurie up on the BiPap. She has helped so many here have a better quality of life.

I'm so sorry you are here but let us help.
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Old 01-07-2018, 09:25 PM #6 (permalink)
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Default Re: Newly diagnosed

I'm so sorry to welcome you here, Missy. The members here give wonderful, supportive and caring advice. I hope that Laurie, and everyone here, can give you advice on feeling better with the BiPap.

Joanna
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Old 01-27-2018, 10:01 AM #7 (permalink)
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Default Re: Newly diagnosed

Hi Missy;

My wife struggles with the Bipap. The Pulmonary nurse re-adjusted the settings but also programmed a reset switch. When the switch is selected the settings revert to a less aggressive setting and then gradually (20 minutes) build to the desired setting. Have only used the Bipap once since resetting but wife had her longest session to date.
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Old 01-27-2018, 03:40 PM #8 (permalink)
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Default Re: Newly diagnosed

A 20-minute ramp is 20 minutes without optimal therapy.

I would suggest that if the 20-minute ramp continues to be necessary, something is amiss with the "desired setting." The whole point of a target volume is that the machine adjusts to the PALS. Often the target volume is set too high (or low), and/or the speed /duration/intervals between breaths are not matching the PALS' natural respiratory drive.
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Chincoteaguer (01-28-2018)
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