Signs of losing voice

[faithandlove]

I have noticed a change in my voice. I sound like I have a cold and then my normal voice will return.

Although I have been using the vest twice a day for 20 minutes each time, I still choke and cough.

Today we went to lunch, and I had the weird voice. After eating, I coughed and choked so much, we had to leave quickly.

Is this the beginning of bulbar? I currently have lumbar - cannot walk and have problems with my hands.

I guess I could wait to see my ALS Neurologist at the end of the month, but I'm curious and would like your opinion. I know it will happen one of these days.

Hugs,
Deb

 

[lgelb]

It might be, or it might be mucus that is not getting out. Are you using a Cough Assist or suction after the vest? It has to get out as well as up. I would certainly ramp up humidification around you (you're in a dry climate), try pineapple or papaya juice and some of the other suggestions you've seen on the threads.

 

[affected]

Usually you sound a little tipsy, a little slurred.

However, a congested nasally sound can be a part of it too.

That's how it was with Chris. It was because structures in the soft palate and facial muscles were weakening. At first I could closely replicate his voice by holding my hand pressing hard alongside my nose down to my chin on one side. I actually did this quite often in the early months as we were seeing dentists, ENT's and facio-maxilliary surgeon being sure that there was something structural happening, probably from an infection starting in the teeth and going into the sinus cavity. So I would try and replicate as we would discuss with doctors or after tests/x rays/MRI, CT and ultrasounds.

As it progressed it became more pure slurring, but as the lips lose ability it is also an inability to form sounds, so at first I was using a bit of lip reading to be sure I could understand him, but then his lips weren't moving much.

It also started with problems drinking fluids at that same time.

I do agree though as Laurie says it could be congestion of the mucus at this point too.

I would just observe for now and you can ask your neurologist to have a speech pathologist check you out. They are brilliant.

 

[Duker52]

I have bulbar onset,. When my symptoms first started it felt like my tongue was too big for my mouth - almost like it was swollen. I would slur just certain sounds and my speech was very nasal sounding. As the months went by the left side of my tongue became weak making it more difficult to pronounce certain sounds. This is when chewing and swallowing also became problematic. Then in Demember we were walking outside and I tripped on a brick (our town has brick sidewalks) and I did a face plant on the sidewalk. Strangely, although I looked like someone out of a horror movie, my chewing and swallowing problems cleared up. A couple months later, the problems returned. Now my speech is 90% gone and I can barely chew, but swallowing is pretty good, thanks to Nuedexta.

 

[KimT]

I could be or it could be acid reflux. When I get reflux bad, my voice will get hoarse and it sounds like I have a cold and gets weaker. When the reflux resolves, I'm back to normal.

 

[faithandlove]

It might be, or it might be mucus that is not getting out. Are you using a Cough Assist or suction after the vest? It has to get out as well as up. I would certainly ramp up humidification around you (you're in a dry climate), try pineapple or papaya juice and some of the other suggestions you've seen on the threads.

Those are the two things I don't have - Cough Assist and suction. I believe I have everything else.

I'll ask at the ALS Clinic for these two items. In the meantime, I'll use pineapple or papaya juice.

You are right about our dry climate, and I did not think about a humidifier. We will have to get one of those too.

So many items needed for this disease!

Thanks for your help,
Deb

 

[azgirl]

I am 3 years in, with limb onset. I am just starting to notice changes in my voice. As the day goes on and I get more tired it is more difficult to get the words out. I speak more slowly and deliberately and softer. It seems like a combination of my tongue have more difficulty, and having enough breath to get the sounds out.

Oh, and I use a humidifier nightly, and the cough assist and every day. Both are helpful.

 

[bigmark1954]

I didn't notice if anybody said to start voice banking right now, if you want to go that route.

My voice went so fast that I did not get to VB. Now the only proof that I ever had a voice is on my cell phone message. Every so often I listen to it and it really bums me out.

 

[faithandlove]

Yes, Emperor of the MotherTwitchers (I love your self proclaimed title. I need one) , I need to check on that too. I don't know too much about the apps or machines, but I'll do some research.

Hugs,
Deb

 

[affected]

search here on voice banking there will be a few threads that will tell you all you need to know to get it started

 

[tripete]

I thought at one time I thought I was loosing mine because it had gotten very weak. It was more breathing related than anything. The words just didn't come out very strong but for the most part where clear.

Now the are starting to slur some and I am choking more. In the end you just ahve to keep pushing forward.

 

[gooseberry]

Try softer, less dense foods the consistancy of pudding. Sometimes this helps.

For my Steve, he would slur his words before diagnosis. Just slightly and only when tired. He was eating regular food but with texture changes. Then he ate some food without choking and drank a lot of smoothies. At this point his voice strength had gotten much weaker due to breathing decline. He also started sounding nasally. Then he had tongue fasciculations. After this weird development, he would choke on most things he tried to eat. So he would only eat if I was beside him. He was using his trilogy 24/7 unless he was eating. He refused the peg feeds. He was eating maybe 300 calories a day by choice because he choked on everything.

If you are having bulbar symptoms and this isnt a breathing issue, or even if it is, make a plan for what you want done if you lose your voice or choke. Steve had decided if he couldnt speak or eat, he didnt want to prolong his disease. He chose no peg feedings. This is important to get straight now before you need it.