Looking for ways to slow Bulbar Onset ALS progression

PrimaVera

New member
Joined
Apr 23, 2020
Messages
3
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
Hi Everyone,

How many of you had Bulbar Onset ALS (slurred speech, trouble chewing and swallowing)? Has anyone found ways to slow or reverse progression of those issues? I tried Neudexta for about two weeks, and it helped quite a bit, but made me very anxious, had a heavy feeling in my chest, and it seemed to irritate my bladder. I will be restarting once a day to see if a half dose can make a difference w/o ramping up negative side effects.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
563
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
There is no way to slow or stop progression,that what the world of ALS is seeking.
Al
 

KarenNWendyn

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Joined
Jul 29, 2017
Messages
3,528
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I have found that maintaining my weight seems to correlate with slower progression. My progression has sped up during periods of weight loss. You may need to change your diet towards smoothies or puréed textures, or get a feeding tube.
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
308
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
There is no miracle drug. Every case is different and people respond differently to different meds. I have bulbar onset and have been taking Nuedexta for five years. It is hard to say whether it affected progression or whether progression is what it is. There might also be a benefit to starting Riluzole early on. Good luck!
 

Don

Member
Joined
Dec 24, 2019
Messages
16
Reason
PALS
Diagnosis
11/2017
Country
US
State
MA
City
Northbridge
My initial symptoms were foot drop and leg weakness but 2 weeks prior to my diagnosis I began having trouble chewing, swallowing and speaking clearly. One of the first things done during my first hospital stay was a chest x-ray and a Thymoma was discovered. This led my neuro to think I could have myasthenia AND ALS. I had 6 rounds of Plasma Apheresis 2 years ago and that helped tremendously with my speech and eating. I have no idea if that would help you but figured I would share my story.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
214
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
Hi PrimaVera- I have to concur with others who say there’s no known way to reverse any of the symptoms of ALS. However, my personal experience has been that as new difficulties appear I learn ways to adapt and minimize the effects as much as you can and things seem to improve for awhile. For example, tongue and cheek biting were worse when I first started having that but I’ve learned to slow down, be very careful and eat differently. As my voice volume decreases and slurring increases I have adapted by slowing down my speech, enunciating as distinctly as I can, rewording, shortening my sentences, aiming my voice and pushing the volume as much as I can when it’s important. I’ve got a voice amplifier that I use sometimes too. Not saying my adaptations are special, I think all PALS do the same thing with all of our decreasing abilities. At first they seems like a big problem and then we figure out a way to keep plugging along - not really improving but adapting. Cause you have to. Good luck!!!
 

notBrad

Senior member
Joined
Feb 26, 2015
Messages
626
Reason
PALS
Diagnosis
04/2015
Country
US
State
OR
City
The coast of
You may need to utilize a cocktail of meds. So take nuedexta for the benefits and Ativan to alleviate the nervousness, vesicare for bladder control, etc.
 
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