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Patti40

New member
Joined
Sep 23, 2015
Messages
1
Reason
Learn about ALS
Diagnosis
08/2015
Country
US
State
FL
City
Hudson
I have recently been diagnosed with either PLS or ALS. In the space of five months my speech is incoherent to most; I have extreme difficulty with swallowing & I think I am beginning to have slight muscle decline though the EMG of a month ago didn't indicate it. The most constant distress is the inability to clear the phlegm in the back of my throat. My neurologist put me on a nebulizer with Acetylcysteine 2-3 times a day to help clear my throat. It helps some. He also says to suck ice chips. Does anyone have an effective suggestion? My speech pathologist has me using the EMST105 breathing therapy device which seems to help my breathing.
 
Patti, I am obligated to point out that some experts warn against using the EMST 150 in MND (the category into which both PLS and ALS fall), because it loads the respiratory muscles. Yours are not weak as muscles per se; they are weak because the nerves that control them are dying. Trying to "train" them may cause them to weaken faster. Admittedly, there is pilot data showing short-term improvements in ALS, but no studies as yet to tell us whether in the long run the device helps or hurts.

As for phlegm, some here have had success w/ Alza Seltzer, papaya and/or pineapple juice, papaya tablets, suction machine, Cough Assist, humidification, essential oils, personal steam inhaler, carbonated beverages, hot liquids, etc. Does the phlegm follow any particular time or event closely?

If swallowing is a concern, I presume you are looking into a feeding tube? Are you using a speech generating app or device?

I'm sorry to welcome you to the club with no exit sign, Patti. Feel free to post more on your situation and we are all happy to help.

Best,
Laurie
 
Hi Patti

Is it that you are not sure which diagnosis you have been given or the doctors are not sure?

PLS usually takes years to diagnose.

The rx you are receiving are not usually given to anyone with ALS/PLS so it seems all a bit strange?

Were you diagnosed by an ALS specialist?
 
Hi Patti
I've tried the nebuliser but it didn't help. If your interested in voice synthesizer apps I've found a few that are free. on Android, Ivona, type and speak and speech assistant.If you install Ivona you can use that voice in other apps, it's really good.
As for the swallowing, I've changed the way I swallow. I either swish the liquid round my mouth before swallowing so my throat is prepared for the swallow or I do a pretend swallow so everything is in place to prevent choking. The second way allows me to actually gulp liquid down :)

Dougie
 
Hi Patti, so sorry to welcome you here but there's good folks here and you can sincerely know that they care and a lot!

Very good tip there Dougie! Also a chin tuck can help a lot. And Nuedexta or cough syrup could aid as well.
 
Dear Patti,
I am so sorry that you have found yourself here with us. We care, and you are not alone. Everyone here is wonderful, and will try to help in whatever way they can. Not only is there much knowledge to be found here, but there is much warmth and support.
Sincerely, Laura.
 
Hello Patti
Sorry to welcome you here but it is a place for friendship, compassion and a real wealth of knowledge.
I have just been diagnosed with PLS.
God bless, Janelle x
 
Sorry you find yourself here, but welcome to the forum Patti. As others have said, there is a great group of people here who are compassionate and well informed.
 
Hi Patti,
Welcome; sorry that you are here. I have a problem with phlegm and find that if I use my cough assistant 2X a day, whether or not I need it, it keeps it under control. I also find that pineapple juice or apple cider helps. I drink with a straw; for me that makes swallowing a bit easier. Through trial and error you will find what works best for you. I was just diagnosed with ALS in June and this group has been so helpful!
take care,
Mindy
 
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