Phlegm issues

[Sroccia]

Hi friends!
My mom was diagnosed in Feb/17 and seems to have bulbar onset although the doctors haven't said. Her first symptom was hand weakness and now she has slurred speech, decreased FVC and just recently issues with swallowing. We live in Canada and are getting the generic version of Nuedexta to try to see if it helps. (she will start it on Tuesday) However mucous/phlegm is a BIG problem for her. She is often choking on it and says it feels very sticky and thick. Any suggestions for that? She is getting a cough assist within the next couple of weeks.. would that help? She has a hard time coughing up the phlegm. I read that some PALS take mucodyne (carbocisteine) or Mucinex (gualfenesin) anyone find that helpful? Any advice would be greatly appreciated! Just trying to keep her quality of life as good as possible and hope to slow progression down long enough for one of these new drugs (Masitinib, Tirasemtiv, Neuown) to become available!
xo
Susie

 

[Firefighter58]

Hi Susie, is your mom involved with an ALS clinic
Al

 

[Sroccia]

Hi Al,

Yes she is They're very helpful however sometimes I find PALS and CALS have great advice to offer

 

[Nikki J]

Certainly some have used guiafenesin with some effect. Also humidification, making sure hydrated and pineapple or papaya juice are other strategies. There should be some old threads. Try searching phlegm but also mucus. Good luck

 

[Firefighter58]

Sorry Susie that I can not add any more to Nikki,s comment, I have never experienced this problem
Al

 

[Manhattanite]

Everything that Nikki said has worked for us and I learned it all from doing searches on the forum.

My PALS' Trilogy ventilator is attached to a humidifying cup. We didn't have the settings high enough so he was getting a lot of sinus congestion. Once we increased the humidification the sinus issues stopped.

I give him papaya juice and pineapple juice as a prevention against mucus - I think it is working. In any event the juice keeps the PEG clean.

The cough assist machine has also helped, especially if used after giving him a saline mist with the nebulizer.

Hydration is important to keep the mucus thin. If your mom is already having trouble swallowing she might be a bit dehydrated.

I assume your clinic has already addressed the issue of a PEG. If your mom wants to get one, sooner is better than later.

 

[Sroccia]

Thanks Nikki! We will try that! She also has bad reflux so sometimes the pineapple is an issue...but we will try!

 

[Sroccia]

Thanks so much Manhattanite! We are kind of experimenting with all of this stuff.. I'm thinking maybe the papaya juice might be easier for her to take..might be less acidic? Hydration is definitely an issue, as she is having trouble with water. This is a new issue..up until a couple of weeks ago swallowing wasn't a problem . The PEG is a feeding tube right? If so we had the conversation with dietician about it last week. My mom isn't ready for it yet mentally, but we can't have her choking either. It's a tough situation. She should be getting the cough assist sometime next week so I"m hoping that will help too.

Thanks for your advice everyone!!! I don't feel so lost knowing there are groups like this one with supportive people going through the same stuff
xo

 

[tripete]

Take two Alke Seltzer each nite. It will help. It has all but eliminated my Phlegm.

 

[Sroccia]

Thanks Tripete! I will get her to try that!