COVID-19 -- Avoid people. Get refills.

[EricInLA]

I admit to flashes of the thoughts Jessie expresses above. As I start to feel some progression in my legs (before it was only hand/arms), I realize my feelings about Covid-19 are a bit complicated. I understand the concern people have - especially folks in the high risk category - but I just can't get worked up about it myself. Everyone is paranoid about contracting a novel virus with a higher-than-normal mortality rate, but I already have a fatal disease. I know this is a bit narcissistic (not proud of it) and it's not rational, because this virus can take you out much faster than ALS. Also I'm very worried about pALS who are just getting to the stage of needing the respirators. Isolation is also a concern. I wonder what it will be like when we get through this storm, and people can resume normal lives, but we pALS will still be stuck with our lousy disease. OK mini-rant over. I hope everyone is doing OK during this crazy time.

 

[lgelb]

I thought I would list out possible BiPAP/Trilogy/Astral settings changes/gadgets that someone might need if they acquired COVID-19 or any other respiratory infection, such as a cold, flu, bronchitis, or pneumonia. Of course, I'm always happy to help fine-tune the settings for effectiveness and comfort, and can walk you through what to do.

• Changing volume support modes (iVAPS and AVAPS) to pressure control, to allow for frequent coughing. If the PALS can sleep at intervals without coughing, the machine could be returned to volume control, which usually serves PALS better, during those periods.
• Adjusting pressure settings up or down -- probably down when coughing -- to comfort.
• Increasing trigger sensitivity for faster inhalation support, or decreasing it such that gasps do not prematurely trigger the machine
• Adjusting cycle sensitivity to support shallow breathing
• Removing backup rates esp. in waking hours; any respiratory drive is usually triggered by coughing, and, as some of you know, I don't believe backup rates should be triggered anyway, with all the other settings the best they can be
• For some, intermittent mouthpiece ventilation during periods of uncontrolled coughing may be more practical than a mask. An angled 22mm mouthpiece, also used for nebulizers and available for online purchase without a prescription, can be attached to the BiPAP hose, and then mounted in an accessible location. Hoses are available in lengths up to 10'.
• If you don't have both a nasal and full face mask, this might be a good time to stock both.

Machine humidification may require adjustment. Filters and hoses should be kept clean to avoid cross-contamination and potentially reinfection.

Having a pulse oximeter to monitor sats (much more likely to drop in pneumonia than everyday ALS) and a BP monitor are also considerations, since some people have had reduced heart rates (bradycardia) and hypertensive crises with COVID-19. In ALS, these are probably not so much "let's go to the hospital" as "let's address the issues" numbers. These machines can be ordered on line.

Best,
Laurie

 

[vltsra]

Thank you Laurie. If despite all of my isolation efforts my PALS ends up with COVID-19 I will certainly take a detailed look at his settings.

Eric my PALS said the same thing. He said he already received his fatal diagnosis, and we were already pretty much house-bound with some minor exceptions. A year ago he experienced what seemed like a rapid downturn and ended up needing more support, including Bipap, power chair, and home modifications. I'm really glad this didn't happen this year. I don't know how we would be handling it if we had to deal with a rapid decline right now. He's fairly stable, as ALS goes, for now.

V

 

[COSister]

Thinking of all the PALs and CALs. Missing Kay always. Don't know how we would’ve done it now. Stay strong. Just breathe. Part of Kay’s mantra.