trouble with coucking and spit

[danthecaregiver]

Hello Everyone, I hope all is as good as they can be.
I have been taking care of my friend robert for the last 3 years and he has slowly lost his abilty to move and for the last few month been using the lift to get him to his chair and the commode, setteled in to it just fine but came to another pitfall!
He has been gettin into these coughing fits, and spitting up silava, wants me to hold the cup so he can spit it out. ( looks like spit clear ) starts out clear throught but end up sounding like he is really got alot of stuff in his throught, hospice says to give the drops and that seens to put him into a depression wher he cant even try to speak, been waking up and calling in the night 5 times (i need some rest) what i want to know is info on a device that will suck the stuff out hospice says it not a good idea. can i get some feedback. thank you. danthe caregiver

 

[luvnmm]

Dan,

You'll have to forgive my ignorance here but I am vaguely aware of two options, there is a vest that is supposed to help with coughing and then there is the cough assist. I don't know much about either other than the names. I don't know if there is a certain time frame in the disease that you can use either. You can always contact your local ALS support group and ask them. They generally know about these things. I'll try to do some research on the internet about both of them and let you know.

Sorry I can't be of more help...at the moment anyway!
Take care,

 

[luvnmm]

Dan -

I haven't found all the much positive on the internet for the vest. You may find some information on this site in regards to patients/caregivers that may know more than I can find. I'm still in the process of research on the cough assist.

 

[BarryG]

Dan, thank you for looking after Robert, it must be a really hard job. As bulbar symptoms progress the buildup of saliva and phlem in the mouth and throat becomes a serious problem. There are two main things that you need to deal with it, the first and most important being the suction machine. I now use mine at least once every day to suck out the gunk which ranges from thick saliva to hard build up. The other device which is less common and something that I do not have is a cough assist machine. What it does is simulate a cough by inflating the lungs with positive pressure and then rapidly deflating the lungs with negative pressure. This action brings the "stuff" up the airway to where it can be sucked out with the suction machine.

It is also important to remain well hydrated so that the saliva does not become too thick. Thin saliva is much easier to deal with than thick.

I don't know why hospice would not think that a suction device would be a good thing, sure you do have to be careful but I would be lost without mine. Choking on throat goo is very uncomfortable and very scary.

Best of luck
Barry

 

[CAHPAH]

The vest Linda is talking about is a devise made by a company called Hillrom. You can learn more at 'thevest.com'. My wife tried one for about a week and we sent it back. It runs around $16,000. Our ins. would have paid 80% but we did not find it very useful, at least not at this point. It basiclly beats your chest by alternating air through tubes strapped around your chest which is supposed to break up any stuff so you can cough it up. That all I know.
Jim

 

[danthecaregiver]

Thank all of you, the hospice nurse is here now so i will get back

 

[flower]

hello this i s my first visit I have als . I was diag. in 02/10 my dr feels I have had it about 3 years . my first synm. was with my speach. i have been having trouble with my breathing with mim. excertion I become sob. I received a cough assist in april, I had a cold at the time,but it was very helpful . It felt real weird at first ,but it sure does feel good when you can't cough

 

[chriss]

Hi Danthe,

Is the saliva thick? As Barry said above keeping it thin makes it easier to get rid of. Each day we battle to keep it thin and also to get rid of it. On managing the saliva, to keep it thin we take up to eight paw paw/papaya tablets (chew them) a day, drink regularly dark grape juice, put the nebulizer (normal saline solution)through the hose for the bipap, make sure he is using the humidifier on the bipap most of the day, stay away from dairy products particularly cheese (unfortunately)and take up to three bisolvin tablets (to break down chesty mucus). So for us it is an ongoing management strategy and you have to do these things routinely every day. He also has morphine subcutaneous(for breathing relief) and we have some midazolam syringes on hand also which help when he is really stressed to relax him as when he is having trouble all the chest muscles tighten up which makes breathing mores difficult.
We were also advised by palliative care(your version of hospice I think) against suction machine as they said it stimulates more saliva. We were also told that normally a person will swallow up to 2 litres of saliva a day but in als as the muscles become weaker then you do not swallow as often and it builds up so to speak. Don't know how true it is, but I do know that at times the saliva is torrential! So we have not used suction as the build up is deeper then where the suction hose can reach and we did not want to stimulate more saliva. That is only what we have done, but it may not apply to you as I can see from other posts that suction has been really helpful to others. Maybe we have a different type of machine? I don't know how much of what I've said applies to your situation but hope there is something there that you can use.
Kind Regards

Chris

 

[luvnmm]

Hey Dan!

Me again. Here is what a friend told me about the vest/cough assist. She is a social worker with the ALS support group I go to here in Richmond, VA.

There are some people who do not take well to the Cough Assist, but there are some that swear by them. Toni, RT from MED, says that it is a “medieval torture device”. I know that this device will follow a person through the disease, where as the vest will only shake the snot loose in you, and not clear your airway. This device will help you keep your lungs clear throughout the disease and clear your airway when you are no longer able to. The ideal situation would be if Medicare ad insurance allowed people to have both, but they don’t.

Also, the suction that Barry spoke of is supposed to be quite helpful. You're going to get multiple opinions about these things, which isn't necessarily helpful to you in your current situation. Perhaps speak with a respiratory therapist and get their input.

I hope some of this is helpful to you.
Take care of you and Robert.

 

[fightinglikemad]

I use mucinex (do not use mucinex d) and give my husband one right before bed. But you have to keep robert hydrated whuile using it.