Cough assist

[ECpara]

My husband is really having a time keeping his throat clear after eating. He explains it this way; he has to cough up his last consumed bite because it won't go all the way down with swallowing. The beginning and majority of his meal goes down because each bite is followed by the next. The food he's consuming is basically a "bird" portion, and pretty much smooth consistency. I wish he would give up on food altogether (he does have a PEG in place), when he clears his throat I swear you can hear him in the next county, and it goes on for quite a while. But he insists on still "eating". He's also choked on his own excess saliva, which he spits out with frequency. He does take atropine drops and Benadryl which helps, but not entirely. So my question, how would a cough assist machine help, or suction? Is he to that point? His next appt at the ALS clinic isn't until September, so I thought I'd ask you folks who know best!

 

[Sunnyflmom]

My mom with bulbar onset would be lost without her suction and cough assist. In fact the cough assist broke on July 3 in the evening and my dad got the company to go to their home on the 4th of July to replace it. She cannot swallow at all so she uses her suction like every 10-15 minutes and the cough assist several times per day. I was relieved when she finally gave up on attempting to eat and rely solely on her peg tube. Listening to the gagging and coughing and attempting to get things up (in her case it's always phlem) is very scary and heartbreaking. Oh and she always has a hanky in her hand to swab at any saliva.

 

[Janie H]

I have the same trouble when eating, it is my most severe symptom, at night I cough until my throat won't cough anymore, I would like to know more about this cough assist machine. I am new at all of this, tongue and body fasciculations and choking are my only symptoms, no muscle weakness, please keep me updated on how your husband handles this.

 

[adozi]

It sounds like he could definitely benefit from cough assist and suction machine. Also i think it was my OT who told me that tucking my chin would help me not aspirate food or drink. Tuck it down to his chest. Also, certain foods, anything dairy based or particularly sweet makes me really phlegmy. What i do is take most Nutrition through the PEG, and only eat bites or on special occasions. Hope this helps.

 

[ECpara]

Thank you all. Sunnyflmom, sounds like this will be my husbands path soon. Glad it helps your mom, I'll have to convince him it is necessary. Your right, listening to the coughing BREAKS my heart. Janie H, I will keep you posted. So sorry for this journey for you, too. Adozi, he's pretty good at the chin tuck and avoiding aspiration, but sometimes he is caught off guard, especially from saliva 24/7. I see him taking more Boost Plus through the tube and less food by mouth. But like you, he will "eat" some favorites. We'll be looking into cough assist and suction before long.

 

[Evie Dawson]

Suction machine have a mask that covers mouth and nose, and mechanical pressures of 40/40, it forces air into lungs, and then sucks the air back out –by creating a cough. Suction machine goes along with the cough machine which brings up, the suction machine brings out. They have an effective working.

 

[adozi]

There are also medications for thick mucus (Mucinex) and excess saliva (Elavil). Is he taking those?

 

[ECpara]

He's tried other prescriptions for the excess saliva but the only one that he's been satisfied with is atropine drops and Benadryl. Have never tried Mucinex for the mucous, I'll suggest it to him, thank you!

 

[Barbie]

Be careful with the atropine and benadryl! you can not dose both--they have the same active ingredient and can cause the liver to shut down. I had experience with this, my husband was on atropine for saliva and took a full dose of benadryl after a double dose of atropine, and could not pee for almost 18 hours. he was suffering. doctor told us afterwards about the ingredients.

My husband says he is "allergic" to things, that is why he coughs! LOL he is in denial. doesn't have a peg, insists on eating very little, all pureed, by mouth ...

 

[jellis86]

I also eat small bites and swallow carefully. On a few occasions, I have had to cough up a piece of stuck food. So far they have cleared out quite easily. I do not use a suction machine or a cough assist yet. I use my feeding tube for meds and some feeding. I eat a lot, 2 or 3 times per week, of DQ Blizzards with banana and strawberries, (banana split Blizzard). The consistency helps with swallowing and it's high in fat calories which both my neuro and nutritionist say is important for PALS to help prevent weight loss.

I use atropine drops for saliva issues. When I get bouts of thick phlegm I use a saline nasal rinse, which works wonders for me. I also drink fresh pressed apple juice and that seems to help. Taking a cough drop, with menthol such as halls reduces the irritation caused by phlegm.

 

[adozi]

I take loratidine for allergies, mucinex (you have to get the non time release kind if you are putting it through the peg tube), and sudafed or at night afrin as decongestants (all of the mucinex with decongestants in them are unfortunately time release). However, i have allergies to pollen or mold or something common, because if i don't take that allergy pill, my nose is stuffed up, even before ALS.

Barbie, (I'm very sorry if I'm overstepping and telling you things you already know ) i didn't want a feeding tube either, but now i wouldn't be without it. I know Your husband has been dealing with ALS a lot longer, but to me, it's so much easier. Eating became one more hassle i had to deal with. Between my tongue not working properly, tucking my chin, and all the phlegm, it's just not worth it any more. With the feeding tube, we just hook up a gravity bag and forget it! I think it's great.

 

[jellis86]

I forgot to add that, along with nasal rinses and juice, I also take 1 Zyrtek (cetirizine) 10 mg per day and I use Flonase (fluticasone propionate) nasal spray 50 mcg 2x a day/nostril. I have been on this for quite some time because I too have allergies to mold, certain trees and grasses, etc.
This reduces the amount of postnasal drip...postnasal drip causes a lot of coughing and dealing with thicker phlegm in the throat. I have used mucinex when I get a cold or other big nasal issues and other drugs/remedies aren't working as well. But I haven't needed it since last October.

 

[Barbie]

adozi--I tried to convince him to get a peg-so did the neuro. his response was " you said I needed one 3 years ago so it is a good thing I didn't listen to you' Well, he weighs 120 lb soaking wet and eat very little, all pureed. he knows about peg tubes and chooses not to have one. he doesn't believe that he needs one. I don't even talk about it anymore.