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[Herdaughter]

I’m sorry for the reason you have had to come to this site.

 

[Herdaughter]

Hi All. My mom started Radicava 13 days ago and everything seemed to be moving along well and then..............she stopped breathing while we were out having lunch with her cousin from DC. She is ok now but holy cow!!!!!!!!! Ok universe we got the message- we know this is bad. We knew it before! Can you let the poor woman enjoy a steak and a drink for one day for crying out loud!?!?!?!?

I should explain. In addition to ALS, my mom has heart disease and she has told everyone (believe me - everyone) she wants “to go” via heart attack versus ALS, so she’s “taking herself out” with red meat and ice cream. So when her cousin flies out just to visit with my mom (awesome ), we decide to go out for a nice lunch complete with steak and a cocktail. Why not?!?!?

My mom takes a sip from her salt rimmed glass and before she can even swallow, she begins gasping for air. I’m scrambling for a cough drop thinking this is the beginning of a coughing fit before I realize that she is not getting any air. Thank goodness, it only lasted a few seconds but it was terrifying for all of us and completely wiped my mom out. She took a Benadryl once she was able as she wants to believe it was an allergic reaction to the salt on the drink. But as we know - that’s not the culprit. The reason is ALS. The doc said “hopefully it doesn’t happen again” but let us know if it does and we’ll get you in to see the speech therapist.” What?!?!?!? That’s it? It seemed so nonchalant. Oh her throat muscles just stopped working? No biggie? Criminy sakes people! I suppose I should be glad they weren’t being alarmists but I wish someone said something like “gee- that had to be scary.” Or at least acknowledge the elephant in the room.
The good news is that the doc doesn’t think it’s the Radicava, so mom can continue on with that treatment.

Does anyone have any suggestions on what I can do to help her if this happens again?

With much love and gratitude,
Megan

 

[JimInVA]

Megan,

My PALs will occasionally have such episodes. She basically describes it as her "throat just closes up". When that happens, she can't breathe again until it relaxes. We've done two things while waiting for it to relax - (1) I've used her cough assist to help move air (though she's not really sure it was helpful until her throat relaxed) and (2) I sit her as upright or slightly forward as I can. With the throat closing not being as much of a surprise (as the first few times), Darcey is managing to stay calmer and less anxious... and that seems to allow a quicker recovery with her throat opening back up. We've only experienced this a handful of times... so we're still working out the process, too.

My best...

Jim

 

[affected]

The most important thing is not to panic and to relax as much as possible. Sounds like a laryngospasm which is very common for PALS and very scary.

Care must be taken to let her be and help her learn to relax as it is very easy to aspirate if it happens when eating or drinking and that is to be avoided for sure!

We do understand how serious this all is and what a reality slap in the face these episodes are, I'm so sorry.

 

[Herdaughter]

Thank you soooooo much Jim and Tillie. I really really really appreciate your feedback. This is all moving so quickly.
Love,
Megan

 

[lgelb]

Salt grains can be irritating. Would try a smoother drink next time.

Steak is of course very difficult to chew and swallow small enough, and has insoluble residue. If she wants a high cholesterol lunch (nothing at all wrong with that), a burger and chocolate shake, among many other options, would likely go down smoother.

 

[Herdaughter]

That makes sense. She has been craving steak and wants to eat it until she is no longer able. Feels like that time may be now. Thank you for your help and feedback.
Much love,
Megan