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Rhonda

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Mableton
When I went to clinic 4/13/07 they said I needed a cough assist machine because I had a weak cough. Which I didn't think I did so they insisted I have one. The guy said just to use it to exercise my lungs. Has anyone ever heard of that. Today they brought it and a suction machine which she said that was to have when I need it later down the road. Did medicare and my insurance just get screwed without the vaseline? That's ugly to say, but when you go to clinic, if they don't check my breathing stuff first by the time they get to me I'm wore out, so of course my cough is weak.
Rhonda
 

patricia1

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Sep 18, 2006
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newjersey
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lopatcong NJ
the same thing happened to me I told my team at ALS that a month ago I felt congestion in my chest and told them that when I coughed nothing came up So guess what they had a RT came over with this hugh machine called a cough assist I tried it and it nearly took my nose off .Even the RT said I didnt need it and now its in the closet collecting dust .Iguess if I ever need it I have it Pat PS and they gave me a nebuilzer too
 

CindyM

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I read somewhere that it is best to have these things on hand since by the timeyou really need it it might take a few uncomfortable days to get one. Cindy
 

trustinggod

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The cough assist is terribly unpleasant but from my experience an absolute necessity if you have a cold or worse. It's true that using it daily to exercise your lungs is beneficial and can help your lungs to function better and perhaps longer.
Linda, my PALS hated it with a passion and I'd have to bribe her with extra foot rubs to get her to use it. Though it's scary for both the user and helper the first 10-20 times after that it's just another nuisance that goes with the disease.
 

Poco

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cough assist too

We now have a cough assist machine. The ALS clinic ordered it for us and I agree it is awkward. Our situation is different because our pulmonologist does not want Dick to use it while our ALS doctor in another city wants him too. We are trying to get it sorted out. An uncomfortable delima. Our pulmonoligist has worked with ALS patience so he is not green in that department.
phyl
 

CindyM

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Hi Phyl. I wonder what their reasoning is for starting-or not starting-the cough assist? Cindy
 

skooter

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Apr 24, 2007
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cough assist

my dad is in the last stages of bulbar palsy als... and is bed ridden... we had been told about the cough assist machine when he was first diagnosed with als 15 months ago... and complained that he often had a hard time getting phlegm up... they came through with the cough assist machine 10 months after diagnosis ... when they were fitting him for a bi-pap mask... he never used it until recently... now he has a hard time coughing... and this machine is able to pull the mucuous up... it also expands his lungs... which is a necessity now that his breathing is more shallow... while this machine spent 5 months taking space in a corner and my father refusing to even try it... i think it is helping him tremendously at this stage of the disease.
 

CindyM

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So maybe it is something to have on hand in case the need arises? That makes sense since probably at the time you need it you will not want to wait for it to be ordered. Cindy
 

midwestgirl

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Mom is having a lot of anxiety, as well as having coughing attacks. I think a cough assist machine may be a benefit, but I am a little worried mom will not want to use it - especially after reading previous posts about it being difficult to get used to. Mom has been prescibed Zanex to help with anxiety, which is helping. But I am worried about the coughing. She did aspirated phlegm/ emesis just recently (we think - she spiked a 103 fever) was put on antibiotics and is OK now, but I worry that it will happen again. If mom refuses a cough assist are there any other good treatments? How much do nebulizers help? Any suggestions, or tricks to getting used to a cough assist?
Thanks!
 

davis08

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Aug 17, 2007
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PALS
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US
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ga.
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gainesville
cough machine

I have bulbar als, use cough machine . I didnt use it for
about 6 mo. then all of a sudden I couldnt cough flem up.
It works pretty good for that, I dont think I could get
by without it now.

Davis
 

bucky

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Joined
Jan 23, 2007
Messages
20
Reason
PALS
Country
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Wisconsin
City
Poynette
cough assist

I have Bulbar onset A.L.S. Dx Feb 07 I use the cough assist and the suction machine. I use both daily. I use the cough assist in the morning and before bedtime. I follow up with the suction machine. There are times during the day on occasion when I use the cough assist. Sometimes my throat seems to have a lot of mucus and using the two solves the problem and seems to keep the air way open. The cough assist has numerous control options. Finding the one combination that worked was a trial and error process. It has been in my opinion very helpful. This disease is horrific as we all know. My peg, the suction machined, the cough assist machine, and my laptop with my speech software has certainly helped make the journey a little more palatable. The onset was what I consider fast. Speech started going in Jan 06. It was pretty much gone by November. Swallowing was over in Feb. thus the peg. I can't imagine dealing with this on daily basis without these advancements. Also, forums like this have helped me realize, I am not alone.
 

midwestgirl

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Davis, Bucky - thanks for your response. Bucky, my mom seems to be progressing much the same as you. Dx was December 2006, but speech started sounding slurred March 06, and difficult to understand by December 06, her peg tube was placed
April 2 2007. She has been using Scopolamine patches to control secretions. Now she seems to be having more problem with phlegm in the back of her throat. How difficult was it for you to get used to the cough assist? Are you able to suction yourself? I've heard there are two types of suction - one something like a dentist would have? Or the other type which is more invasive. I doubt if mom will react positively to either one. Which one do you have? Have you tried any nebulizers, or inhalers? Sorry for so many questions, but mom may need time to consider a cough assist, so if anything else can help with the phlegm it might keep her a bit more comforable for a while. Mom is getting a lot of water through her feeding tube. I wonder if the Scopolamine patches should be discontinued - if they are causing the phlegm to thicken; of course then the secretions will become a problem so that is not a good solution.

Any suggestions will be appreciated!
 

anne

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CA
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ontario
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unionville
Hi Midwestgirl: I think my mom and your mom are experiencing the same problems. No voice, unable to swallow,cannot open mouth very much, has a peg tube, unable to wear dentures, breathing issues starting and the phelgm is a big problem for us. Our ALS clinic has given my mom mucinex mini melts junior strength for the chest congestion--phelgm problem. It is not available in Canada so I have a friend who lives in the U.S ship it up for me. I am not sure yet if it works. My mom also was told to use Accent meat tenderizer for her phelgm. It seems to work somewhat. Last week my mom decided she wanted to cut back the elavil that she is taking for the saliva problem. She thought it would make the phelgm thicker however, with cutting back on the medication she was coughing constantly. She may have been aspirating the saliva. Her breathing is a little better when she uses the bipap. She certainly sleeps better at night. Her mobility remains excellent along with the fine motor skills but unfortunately because of the breathing she is unable to exert herself. It has been a very big adjustment for all of us.
Perhaps I will have to look into a cough assist machine for her. Not sure how that will work out for her nor do I know how it works.

Cherish every moment we have with our loved ones. Anne
 

Mary Helen Barr

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Joined
Mar 6, 2006
Messages
61
My father has had a cough assist machine for a few months now--he has to pay each month the portion that insurance doesn't cover. I'm not sure it does him good, because he doesn't keep his lips sealed around it. When it is "blowing" air, his lips are closed, but when it "sucks" air, he opens his lips while holding the mouthpiece in his front teeth and breathes. He has a very slow progression of ALS. He's had the symptoms for 7 years now, and diagnosed for 6 1/2 years. I don't think he has bulbar symptoms, but how do you really know when they start?
 

bucky

Member
Joined
Jan 23, 2007
Messages
20
Reason
PALS
Country
US
State
Wisconsin
City
Poynette
cough assist

Midwest Girl and Anne. All of the issues you have posted are a carbon copy of my problems. The excess saliva is a constant battle. My G.P. and Neuro have prescribed the following. Glycoprrloate 1 mg twice a day, Amitriptyline 10mg twice a day Oxybutin 5mg twice a day, scopolamine patch every other day. Also Atropine, an eye drop. The eye drop you put a couple of drops under the tongue. It tastes awful and I did't see much change if any.The Oxybutin works the best. Its also available in liquid so no pill crushing. The Amitriptyline seems to help and is also a anti depressant. I take it before bedtime. For anxiety I have been prescribed with Alprazolan, .25 mg tablet. So what works, as mentioned the oxybutin seems to work the best. The Glycoprrlate thins the secretion and helps. Of course having the doctor prescribe all of the above is paramount. Side effects should be explained. Getting back to the cough assist machine. In addition to the mask, there is a plastic tube you can use instead of the mask. I can't open my mouth enough to use it. Also, I have found keeping the mucus and secretion out of my throat by using the suction machine and the cough assist machine reduces the saliva problem. Maybe it just goes down my throat. I am still able to use my arms, hands and legs so I do all this myself, for now. Also, the cough assist has a lot of options with the controls. Experiment. I jokingly told a friend the first time I used it I found three fillings, my partial, and a penny I swallowed when I was four in the mask. I hope this information helps. Stay strong, your all in my thoughts and prayers, believe me. Bucky
 
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