Hot tips anyone

[jo aust]

Has anyone have any handy tips on helping my mother. She has pbp and is coping well however she has problems with excessive phlegm build up. Last time she stayed with me she stopped breathing because of the phlegm and I called the ambulance. At hospital the doctors perscribed tablets to help reduce the build up however it would be good to know what I can give her to help reduce it more. So far she sucks on ice cubes. It is worse at night and she sleeps sitting up. She is on peg and really cannot swallow much at all now. Also if anybody has any ideas what I could do if she stops breathing again. Get her to cough? thanks Jo.

[Pearl]

First of all, let me say that I'm REALLY NEW to all this ALS stuff, but I'm wondering why your respiratory thearpist (if your mom has one, and she should) hasn't offered more options for your mom. There is a machine that is called "cough assist" (that does just what the name says: helps the person make a good cough). There is also a small suction machine that you can get for the home - again through a respiratory therapy company (or hospice, or home health).

Has your mom attended an ALS clinic where they have many resources available in one place? If that is not available to you, please consider contacting her doctor and asking for these items (especially the suction machine).

Yes, certain medications will also decrease secretions.

Anyone else with other tips?

[tracy]

Hi - My mother is convinced that she ALS- it has yet to be diagnosed. I first noticed her slurred speech 3 yrs. ago August. She has been through many, many tests and they are all inconclusive? muscle coordination tests, blood tests, MRI's. Her speech is dwindling down and she chokes alot. Now reading this bulbar forum I believe that, that is what she has. I read some posts that say saliva is thick she hasn't had that symptom.
She is going to Columbia University in April for overnight testing - I don't have any idea what tests. Is there anything anyone can advise me on in terms of questions for the Dr. what medications I could ask about? a speech pad for loss of voice?
I will have more questions to follow if you don't mind answering back!
Thank you so much and God Bless You All!
Tracy

[Al]

Hi Tracy. Welcome to the forum. Sorry about your mom. Feel free to ask what you need to know and try using the search feature near the top of the page. There is a lot of information stored there. There are a few illnesses that have the symptoms you describe so your mom may not have ALS. Progressive Bulbar Palsy or Primary Lateral Sclerosis are two and there are tumors and a few other things that could cause those symptoms. Not trying to scare you but ALS is not the only thing that gives bulbar like symptoms. Check through some of the other threads and try to find more information. Click on search and type in a key word and hopefully you'll find what you need. If not ask again. AL.

[tracy]

:-D Dear Al- Thank you so much for you help, I really appreciate it. I am determined to learn how to use this web-site.
Tracy

[jo aust]

First of all, let me say that I'm REALLY NEW to all this ALS stuff, but I'm wondering why your respiratory thearpist (if your mom has one, and she should) hasn't offered more options for your mom. There is a machine that is called "cough assist" (that does just what the name says: helps the person make a good cough). There is also a small suction machine that you can get for the home - again through a respiratory therapy company (or hospice, or home health).

Has your mom attended an ALS clinic where they have many resources available in one place? If that is not available to you, please consider contacting her doctor and asking for these items (especially the suction machine).

Yes, certain medications will also decrease secretions.

Anyone else with other tips?

Thanks Pearl, mum is much better now ,mum can still cough so she doesn't need the cough machine. No one ever mentioned to us the use of a suction machine. I said to mum that kind of machine would be good and we wondered how we would steal one out of a dental surgery without anybody noticeing.{we were just kidding} Anyway mum does not eat anymore she lives only on peg food. I feel this is why she is much better. She had a lot of build up of excess saliva and mucus not phlem like we thought.and I think some of her food would get stuck in her throat. We have talked to her speech therapist{that is who you get here in Australia which sounds kind of weird because mum hasn't talked in months.} and she is still 'looking into it'. The health service is good, but they all seem to 'pass you around' a lot and they definatly take their time. It might sound weird but sometimes I forget my mum is sick. I'm used to feeding her when she visits my house and I've gotten used to her not being able to talk. My two girls seven and four understand her and have grown really close to her. Mum teaches the long stich and latch stitch. She plays silent puppets with them which makes my kids laugh so hard. Mum and I enjoy a good drink at the end of the day.{ I flush a nip of port down her line}and we go to the movies together and watch dvds.
We swim down the rockpool on the weekends which over looks our beautiful beaches and Magnetic Island.
I hope my story can put a smile on your face today just like I have.
I

[JACKIEMAX]

please don't laugh at this tip, but it came from a registered pharmacist. she is a member of our church, and she came to visit my husband. he had spent many, many nights sitting up coughing trying to get rid of the phlegm. he would cough till he just gagged. his pulmonary dr. prescribed mucinex d, and he tried it and it did help, but did not cure.

our pharmacist told him that the next time he got phlegm in his throat to take a big swallow of coke. no substitutes, no other brands, just plain coke, and that would break up the phlegm immediately.

it worked for him, but i have no guarantee it would work for others, but i thought i would pass it on.

good luck.

a new member also,

jackie

[jo aust]

You could be right with the coke tip. My father has also been encouraging mum in the past to have a swig of coke before bed. However now she just holds it in her mouth and spits it out as she is unable to have anything by mouth now. Sometimes the simplist things work out to be the best. Thanks JO.:smile:

[SoniaT]

jo aust,

My mom used to drink Coke everyday, she loved it. She didn't have a lot of trouble with phlegm. I don't know for sure, but maybe there is something to it.

I figure it's only Coke, it probably won't hurt to try it. Perhaps in tiny sips, as my mom used to do.

SoniaT

[patricia1]

Is that coke syrup or coke soda pop thanks Pat

[Al]

TThe other thread where this came up said Coke soda, No substitutes, not Pepsi or generic brands. I've heard coke will take rust off a bumper (when they were chrome) so it must be powerful stuff.
AL.

[patricia1]

It took the red paint off my brothers 1965 ford back when. So I guess it is powerful

[feder]

My sister has bulbar als and had problems with mucus. we ASKED the dr to give her a suction machine. someone uses the machine down the throat to suck up the excess muscus. it really helped-sometimes there are muscus plugs there-that clog up the throat.

[Al]

Welcome feder. Thanks for the input.
AL.

[manfred pungartnik]

Hi ,Not sure if this pertinent,but with regards to swallowing,phlem,mucus etc.,...My daughter is drinking papaya juice..seems to help her a lot..She was dx'd with pma..and her speach -swallowing issues are minor but the juice (pure) does help.Manfred

[CindyM]

Hi Manfred. I saw that recommendation from someone else a time back so I guess you are on to something. Wonder why papaya works as opposed to some other juice? Well, no matter. At least you found somehting that works! Cindy

[hr1982]

Meat tenderizers are made with a substance from papaya; I imagine that whatever is used for that must help with saliva, too.

[manfred pungartnik]

Hi,I'm still researching info on Papayas..seems the active ingrediant is Papain ,which seems to have some effect on "smooth muscles" which are also part of the respiratory tract.This might explain its effect..but like I said I'm still looking for more info,
Manfred