Emergency preparedness

[Ruth33]

So my PALS has not had any bulbar symptoms so far.
The other day he was taking a pill and the water went down the wrong way.
He was kind of choking and gasping.
He was fine, and it could have happened to anyone, but it got me thinking that I need to be prepared for all kinds of breathing related emergencies, as well as falls.
Does anyone have recommendations on reading or viewing material that gives instructions for dealing with these kinds of things.
TIA
Ruth

 

[lgelb]

Hi Ruth,
#1 is to have all paperwork and an advance directive in order. Breathing uses more than bulbar muscles, and things can happen. It's also good to begin discussing what "quality of life" means, early in the disease.

You may want to start considering fruit juice instead of plain water, as the sugar can make pills easier to swallow. Later on, you can use thicker shakes, applesauce or pudding, etc.

When he begins to use BiPAP, there are tricks with the settings to change them when someone is coughing or choking, you may want to thin mucus as kind of a prevention tactic (lots of threads on this, from soda to Alka Seltzer to pineapple juice), and some people use a CoughAssist and/or suction machine to emulate coughs and clear the airway.

If he begins to have hitches with breathing, or his sleep seems less effective, it's time to ask for lung function tests that are used to justify BiPAP.

As for falls, when he becomes the least bit unsteady enough to risk a fall, it's time for a rollator. Then a wheelchair. You want to stay ahead of equipment needs, because it takes a while for items for which you seek insurance reimbursement (hospital bed, wheelchair, BiPAP) to get to you.

Still, in re falls, as a plan B, you can have an ottoman or low chair that he could sort of pile on top of, to make it easier to lift him back up. But when he cannot stand up well by himself, even with your help, that is the time for a lift. Often your ALSA chapter will have a loaner.

I've also attached a first responder/ER guide that I posted a while back. But given all the perils of hospitals for PALS even before the pandemic, the idea is to stay away from hospitals, and to have a clear plan as to if/when calling 911 would be desirable.

You will want a copy of your state's POLST form or its equivalent on your refrigerator, and carry it with you. You will also want to print out and display/carry a list of medications and conditions, and keep it up to date.

Best,
Laurie

 

[Ruth33]

Lauri,
Thank you so much for replying.
After a couple of falls, he is now using a walker all the time.
He has trouble even standing without it.
The guide for first responders is great!
Unfortunately, for me, it's too much medical jargon, which I guess will become familiar at some point,
For now should I just go with regular CPR, or are there specific instructions for CALS & PALS?
Ruth

 

[lgelb]

I'm glad he has a walker. But if it's his primary standing support, it's time to start talking with his clinic about the process to get a power wheelchair. As his core and grip worsen, it won't be enough to keep him upright.

Re CPR, my point was that before even contemplating it, and it usually doesn't come up in ALS, you should be clear on his wishes. Past a certain point in the disease, many PALS do not want life prolonged and there are also considerations for what the quality of life preserved would be for someone who was deprived of oxygen for a certain time, just as with non-PALS.

Most PALS don't die of some sudden attack, but rather from no longer being able to move enough air, even with the support of BiPAP. However, it's true that choking can cause aspiration and pneumonia. That's why when someone no longer coughs well, BiPAP, suction, a CoughAssist, and the Vest may all be considered as part of the solution. It just doesn't work forever.

But if your PALS had a heart attack with respiratory arrest now, you would want to save him -- so you would do CPR as usual. But when first responders arrived, you would want them to have the information I posted about ALS. You can register with E911 in advance in many cities, also. In a small town, there may be an EMS director who can enter the information in advance as well.

 

[affected]

that guide for first responders was developed by one of our past amazing PALS - and it is medical jargon yes, because it is for you to have on hand to help the first responders.
You might need some conversations with your PALS and doctors about his wishes re CPR and any other decisions on emergency matters.

Knowing his wishes in an emergency is really important so you don't feel like you are being left making huge decisions.

 

[Elkhorn3]

Hi Ruth,
With Bulbar symptoms, it's helpful to get a swallow study at some point. There's a difference between actual choking (food or water going down the wrong way, or getting stuck in the windpipe) and the swallowing process just not working efficiently (takes more work to get food and fluids down the pipe, so they sometimes back up and cause coughing/spitting.) When you can actually see what's going on during the swallow test, you know better how to handle it.

Plus, it's fascinating to see! I got to see my husband's, and I learned a lot about what to do or not do when it happens.

 

[Ruth33]

Thanks guys.
He has not had any bulbar symptoms TG, so I am not familiar with BIPAP, etc.
Walking and standing is getting harder. We had a power wheelchair consult. We are hoping we can hold out till renovations are closer to completion to actually order it. Maybe something less heavy duty for the interim. With our insurance it will be about 4 weeks and we are about 4 months from renovations being complete. (They are about to start PG)