Loss of Voice

[clewbcg]

My pals has had increasing bulbar symptoms for the last 6-8 months. He has been very hard to understand lately, but on thursday, he got hoarse and then woke up friday with no voice. Has anybody else lost their voice "overnight" like this? We have a dynavox on order, but it doesn't seem right that it would just completely disappear overnight.

 

[BethU]

clewbcg ... my voice quality has been all over the map. It seems that it changed daily, although I did have a whiny, nasal sound for a long time. Sometimes it sounded like I had larengitis (sp?), sometimes a whisper, sometimes a murmur.

I would wait and see what happens in the next few days. He may have caught a bug if his voice was hoarse before this happened. Hopefully, he will be able to vocalize again.

But symptoms are VERY strange in ALS. There is just no way of predicting what is going to happen next. Hope he gets his Dynavox soon ... that gives a patient a lot of control back .... and saves caregivers a lot of pressure trying to understand.

Good luck to you and your PALS.


Speechless in LA

 

[BLPhill]

clewbcg,

I for one, have just recently went through what Beth was talking about. I caught the bug. I had laryngitis, on top of my speech problems with als. This did happen overnight, however, my changes in speech and voice as far as als goes, tends to take more time. It took 5 days to regain my voice. WHEW! Didn't know for sure if I would.

 

[clewbcg]

thanks Beth and Betty. We went to er yesterday for a chest xray and blood work. Nothing showed up, so hopefully this is just a bug. His temp is normal, but his pulse is up and his oxygen sat is down (we have an in home monitor-thanks to a wonderful home health nurse who got it free for us since insurance wouldn't cover it). My pals has also had very nasal and garbled speech. He can't say g's or c's at all. Understanding him is a guessing game for me and very frustrating for him. I hope his dynavox comes soon, and in the meantime, I hope he gets some of his voice back.

 

[Jennifer51]

While you wait for your dynovox, download ETRILOQUIST for free...Many posts about it on this form, I use it all the time and love it, as do many on this forum.

 

[Harry77]

It took almost a year for the wife to loose her voice completely, but she did have good and bad days where her speach capability varied quite a bit. We also had a period of about two weeks when her speach system crashed and we came up with a real "cheap and dirty" quick fix. We used the glasses she wore with the reflective spot for the IR camera and duct taped a laser pointer to the side (actual a cat toy we found at Petco). We then printed out an alpha/number matrix on an 8 1/2 x 11 sheet of paper and she used the laser to indicate letters she wanted to make words. I know it sounds kind of Mickey Mouse, but for under $20 she was able to communicate again without having her computer. We now keep this in a draw, with extra batteries, just in case. May give you a cheap approach until your dynavox arrives. Good luck.

 

[mare]

Very clever! ... "Necessity is the mother of inventions"

 

[paulw]

My wife lost her voice gradually over the period of a year. Some days were better than others. Being tired really affected her speech. Since 9/07 diagnosed. she has totally lost her voice and the ALS has progressed rapidly. We have a dynavox and a hand held "say it sam" device.

When we got the dynavox, we purchased the "open" key that allowed it to be used as a normal computer also. Its a windows based operating system. With a wireless card my wife can cruise the web and communicate with me at the same time! Being able to still shopon the web has helped her morale greately.