Old 10-06-2015, 04:59 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2015
City: Hudson
State: FL
Country: US
Diagnosed: 08/2015
Interest: I am interested in learning about ALS/MND.
Posts: 1
Patti40 is on a distinguished road
Patti40 Patti40 is offline
New Member (Say Hi)
Join Date: 2015
City: Hudson
State: FL
Country: US
Diagnosed: 08/2015
Interest: I am interested in learning about ALS/MND.
Posts: 1
Patti40 is on a distinguished road
Default New

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.
Patti40 is offline  
Old 10-06-2015, 09:42 PM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 4,944
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 4,944
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: New

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
lgelb is offline  
Old 10-07-2015, 05:39 AM #3 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 9,804
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 9,804
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: New

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?
affected is online now  
Old 10-07-2015, 06:38 AM #4 (permalink)
New Member
 
Join Date: 2015
City: Haddington
State: East Lothian, Scotland
Country: Uk
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 39
dougieconnor is on a distinguished road
dougieconnor dougieconnor is offline
New Member
Join Date: 2015
City: Haddington
State: East Lothian, Scotland
Country: Uk
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 39
dougieconnor is on a distinguished road
Default Re: New

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
dougieconnor is offline  
Old 10-07-2015, 06:30 PM #5 (permalink)
Senior Member
 
Join Date: 2015
City: The coast of
State: OR
Country: US
Diagnosed: 04/2015
Interest: I have been diagnosed with ALS.
Posts: 503
notBrad has a spectacular aura aboutnotBrad has a spectacular aura about
notBrad notBrad is offline
Senior Member
Join Date: 2015
City: The coast of
State: OR
Country: US
Diagnosed: 04/2015
Interest: I have been diagnosed with ALS.
Posts: 503
notBrad has a spectacular aura aboutnotBrad has a spectacular aura about
Default Re: New

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.
notBrad is offline  
Old 10-07-2015, 10:10 PM #6 (permalink)
Member
 
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 236
fionae is on a very distinguished road
fionae fionae is offline
Member
Join Date: 2015
City: San Diego
State: CA
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 236
fionae is on a very distinguished road
Default Re: New

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.
fionae is offline  
Old 10-08-2015, 05:07 AM #7 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: New

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
Green Queen is offline  
Old 10-08-2015, 11:31 AM #8 (permalink)
Member
 
Join Date: 2015
City: Somewhere In
State: Canada
Country: CA
Diagnosed: 04/2015
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 322
LifeEnthusiast is on a distinguished road
LifeEnthusiast LifeEnthusiast is offline
Member
Join Date: 2015
City: Somewhere In
State: Canada
Country: CA
Diagnosed: 04/2015
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 322
LifeEnthusiast is on a distinguished road
Default Re: New

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.
LifeEnthusiast is offline  
Old 10-08-2015, 06:36 PM #9 (permalink)
New Member (Say Hi)
 
Join Date: 2015
City: Somerset County
State: NJ
Country: US
Diagnosed: 06/2015
Interest: I have been diagnosed with ALS.
Posts: 8
MindyR is on a distinguished road
MindyR MindyR is offline
New Member (Say Hi)
Join Date: 2015
City: Somerset County
State: NJ
Country: US
Diagnosed: 06/2015
Interest: I have been diagnosed with ALS.
Posts: 8
MindyR is on a distinguished road
Default Re: New

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
MindyR is offline  
Closed Thread


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 06:46 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016