Swallow and speech issues

[yafflebradley]

Hello All,

I have read many posts concerning speech and swallowing but would love some advice from a PALS or CALS if possible regarding difficulty in speech and swallowing.
My father was diagnosed with Progressive Bulbar Palsy 6 months ago (onset of symptoms approximately 12 months ago) and the difficulty in swallowing has recently taken a big step. He had the PEG inserted roughly 4 months ago and has been eating exclusively through that for the past 3 months. He was able to drink liquids without too much trouble up until recently.
The issue that has taken a sharp increase is what he has described as a build up of liquid or possibly phlegm/mucus in his throat drastically affecting his speech and ability to swallow. He has very recently tried to use a nebulizer with 0.9% saline solution to see if it improves the condition, but no positive results yet.

What I wanted to ask is if anyone has experience with this issue and if there have been any treatments that you have found beneficial. Whether you have found benefits or not, I would really like to get a better understanding of the next steps so that I am better equipped to care for my father and assist my family in coping.

Any and all comments are welcome and I truly appreciate you taking the time to read this and any experience or information you might share however small.

Many Thanks and wishing you all well over the festive period

 

[GXTrex]

Does he have a cough assist or suction machine? Those help with secretions a lot.

My dad also takes guaifenesin (over the counter for phlegm) and glycopyrrolate (prescription for saliva)

Beyond that we will get a room humidifier to help.

 

[yafflebradley]

Hi GXTrex,

First, thanks for the quick response!

He does not have a either a cough assist or suction, I have been looking into it but have yet to approach him about it.

He is using an OTC expectorant of another type and has found it somewhat useful but limited to be honest. Glycopyrrolate could certainly be an option, thanks I will check that out.

He has a NIV but finds it affects sleep a lot and ultimately it is not worth it to use.

Thanks again

 

[lgelb]

The NIV should not affect sleep -- in fact, it should help it be more restful. I would be happy to help with settings to help that happen. He will deteriorate more rapidly without it.

Here is a thread where we discussed options for dryness, saliva and mucus.

Best,
Laurie

 

[Sandy14]

I was diagnosed with ALS roughly 18 months ago and so far it has effected only my speech and swallowing (and a bit with my breathing). I have been using a cough assist device for about 6 months now and it helps a lot getting the mucus up and out. I also use a bi-pap machine at night which also has helped with my breathing. Also taking mucinex which helps. And I went on clenbuterol roughly 4.5 months ago and that mostly helps my breathing but it also creates increased twitching and muscle cramping.

 

[PALSdottir]

My dad's refused speech assistance technology throughout and now it's getting harder to understand his commands. We have a whiteboard with likely phrases and an alphabet (I've been updating it!).

 

[Cpalong]

Ok what am I doing wrong? I was diagnosed with Progressive Bulbar Palsy and can’t speak or swallow but use a Peg. My problem is getting rid of excessive mucus/phelgm/ saliva that I cannot cough up. I have a cough assist machine that doesn’t work at all and a suction machine that doesn’t work well becayes I gag when any

 

[lgelb]

C, have you asked about an oscillating vest to loosen the gunk so the Cough Assist can help you cough it up? Some people find that works well.

Do you have a BiPAP?