Is there a tube which can put in de throad to help mum?

[lovelovelove]

mum has Bulbar ALS.

because her tougue is useless .she feels Her tongue blocked in her throad, that is why she cannot breath.

Is there a kind of Tube that can put in the throad , to help her to breathe?

She still can walk, i dont want her to die just because of Bulbar and cannot breathe.

somebody can help?
\kisss


Linda

 

[BethU]

Linda, does your mom have a BiPap breathing assist? That will help your mom a lot. The problem is probably not her tongue, but a weakness in her diaphragm, which moves the lungs in and out. The BiPap machine has a mask that goes over the nose, or over the nose and mouth, and does the breathing for her at her natural rhythm.

Breathing through a throat tube is usually done only in hospitals, and is very uncomfortable. If the BiPap works, it is much better. Ask your mother's doctor about ordering one for her.

 

[lovelovelove]

thank you Beth,
My mum has bulbar.
my mum do hv a Bipap,ook cough assist.
but she complains dry throat.
maybe bcos in the last few month,before she got a feeding tube, all the Rilutek she used, stay in her throat.
I think her throat is burned door the Rilutek.

by cough,some white stuff comes out. I think that is the medicine she used in the past.

 

[brendapals]

hello linda,
Funny thing about that Rilutek, that's been happening to me a lot over the last couple of weeks. Feels like it won't go down, and then my throat is irritated all day. Today was one of those times, I coughed and coughed, and choked, and coughed, and peed all over myself (twice)-don't worry, I was home when it happened.

I just told my husband that I will have to start taking my meds in applesauce. And then when I see my neuro in May, we'll talk about a feeding tube.

Hope all is going good with you and your mum for the weekend,
take good care,
brenda

 

[BarryG]

Rilutek is not something that you want stuck anywhere that's for sure! Even though the pill is small I've had to take mine with pudding, yogurt or applesauce for a while now and it works well. I don't know why but I'm a little reluctant to grind it up and put it in the tube before I have to.
Have a good weekend!

 

[BethU]

Linda ... another thing to consider with your mom is that she may have a condition called thrush. It can be caused by dry mouth and throat. I didn't know anything about it, and was complaining to the doctor about the burning pain in my throat and he examined my mouth and prescribed an anti-fungal medication. That cleared it up. Usually with thrush you see some white growths in your mouth, but I didn't have many. Another sign is if your mom's mouth is red and inflamed looking.

It's very uncomfortable. If that's what is happening, it can be cleared up in a week or so.

 

[Tfisher]

Does anyone have any cough assist advice? My mom has a cough assist but I think is afraid to use it, she has an upper respitory infection and has great difficulty clearing her conjestion. She only has suction and I cannot convince her to try the cough assist again. Any suggestions?

 

[BethU]

tfisher ... If your mom is scared to use the cough assist, maybe you could help her overcome her fear. It sounds like she's tried it and was scared or startled by the process.

Could you use it yourself with her there to watch, so she can see that nothing terrible happens? (I assume it wouldn't hurt a healthy person to use it.)

I'm awaiting delivery of mine, so don't know how the settings work. I would assume you can set it lower or higher ... can she be started at a low setting to ease into it, as we do with BiPap?

At least, if you are right there with her when she tries it again, and help her with the mouthpiece, etc., it might help, too.

Good luck. I sympathize with your mom. It's bad enough having ALS, but then to have to learn to tolerate and manage all these strange devices is too much sometimes.

 

[Tfisher]

I think she is scared because the crud is getting stuck and I've had to do the heimlich to get it unstuck over the past few weeks including a quick pull off to the shoulder on the freeway and pulling her out of the car this past Saturday......that will get your heart racing. Last week I did work with the settings and used it on myself but she wouldn't try it again. She calls it the face sucking machine. I'm going to try again tonight.