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lgantert05

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Mar 1, 2013
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Diagnosis
02/2013
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Co
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Denver
Hello everyone,

My mom was actually just diagnosed a few weeks ago and she just told me she is getting "flem" stuck in her chest and she is starting to have a hard time coughing it out. Her other symptoms are left leg weakness/really not able to use it at all, trouble swallowing and slurred speech. I have heard that the swallowing and coughing will soon lead to trouble breathing...does that go hand in hand. Anyone else have experience with this. I wonder if its getting closer to the end? Please give me examples and as much info as possible!
 
Respiratory problems are a serious problem but I would discuss that with her Dr., invasive ventilators can help her breath and allow of a means of vacuuming out secretions that she can not cough up.
 
Hello

First, no, it doesn't mean it's close to the end. BUT...

Yes, it means that breathing issues could well be coming very soon. She needs to have an FVC (breathing test) done to see if she needs a bi-pap. A bipap is a machine that helps force air in and out of the lungs. It's used by those with ALS--some all the time and some begin just using it at night. There is a new procedure being done in some with ALS where a pacer is used to help the diaphragm work longer, basically.

Thick secretions, or phlegm can be hard to get out in PALS due to weakened diaphragm muscles and weakened abdominal muscles. There is a machine called a cough-assist that can help. She might need a suction machine as well. There are meds that can help think secretions.

Pneumonia is very bad for PALS--if she's coughing up anything that is not clear--I'd call her doctor. Green and yellow stuff is not good and can signal an infection.

If she's choking--it can help if she leans forward when she eats (and swallows)She can have a PEG tube put in that will allow for nourishment without her having to worry about choking. (She can still eat with one as well) The slurring and swallowing issues you report are called bulbar issues. In some, bulbar is the first sign of ALS--and many go on to live years and years with this type of presentation.

Also, depending on when she was diagnosed, there are many clinical trials going on at various clinics across the world. I'm hoping she's going to an ALS clinic that can address all areas for her.

If her leg is weak now--it's only a matter of time until she needs a wheelchair--and it needs ordered NOW before she needs it. IT can take a long time to get. Sometimes, the ALS assoc. in your area will have loaners. Falls are to be avoided at all costs with PALS.

If you have more questions just ask! I'm sorry you had to find us--but the folks here will give you very useful information. Most know lots more than I do.
 
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