My Voice

[lilly0119]

Hi all I am new to this group. I was diagnosed in Sept of 2000 with PLS. At that time and until recently my voice was slurred. Now not only is it slurred but also like a whisper. It's like an effort to talk. This is new to me. I am wondering if I am progressing? Is this normal? What to do about it?

 

[Nighthawk]

Have you tried the drug Nuedexta? Some PALS with Bulbar problems claim that this drug has somewhat help them just a little with speech problems.

Did you bank your voice when it was still understandable? That's another choice.

Wish I could be of more help to you.


Carlos

 

[Bear1011]

I think it is normal. PLS does affect the bulbar region. My own mother started having trouble with her speech about 5 years into the onset of her PLS. Slurred words and trouble verbalizing. It's been 11 years now and she doesn't talk much at all. When she does, it's mostly mumbles (she does have dementia, so I don't know how much that contributes to not being able to understand her). In the past year and a half her voice has also decreased from normal volume to almost whispers. So, I think what you are experiencing is normal and you are just progressing. So very sorry. Unfortunately I don't have any advice for what you can do. The doctors never did anything to help with my mom's speech.

 

[lilly0119]

thank you I will ask my doctor about Nuedexta

 

[lilly0119]

From my experience with dementia my father-in-law could be understood with volume, but he mixed his words and thoughts all up so you did not know what he was talking about. I go to the doctor in august so I will talk to her about it. thank you for the reply.

 

[BrianD]

Just sharing something I heard relative to this. True that some say Nuedexta can help with bulbar symptoms. However the drug is only approved for treating emotional lability. Insurance companies have refused to cover anything but that. So some have had to bend the truth with their doctors and say they are crying and laughing at inappropriate times so that they can get the drug coverage with insurance.

 

[Bad Balance]

Having similar problems....like my voice has been dialed back to3/4 speed. No bulbar symtoms yet. 4 years in.

 

[billbell52]

I have Bulbar PLS (very rare). It started with my speech. I woke up one morning in 2003 with a funny feeling in my right cheek. I had problems pronouncing words like strategically. I thought I had an infection in my teeth or jaw. I had been to the dentist a few weeks earlier to get a cavity redone. It slowly got worse. After going to countless dentists and doctors I was finally diagnosed with PLS in 2005. PLs slowly moved down my body affecting my walking in 2008. My speech is very slurred. I have problems with certain sounds. Sometimes it is very weak. Only my wife and daughters understand me. You can get a speech program to help with phone calls. You can read out loud to keep you vocal cords active. The speech pathologist that specializes in neurological speech problems has never recommended any medications.

 

[Bad Balance]

Sometimes its almost like my observations of stroke victims learning to speak again.

 

[old dog]

I also have bulbar PLS. My swallowing is still okay, but my ability to speak is 90% gone. I have always had a slightly unusual speech pattern and was diagnosed with a mild speech impediment years ago at about age 18. It was not considered serious enough for therapy. In addition to slurring words when tired, early symptoms were inability to gargle and pronounce some words. I discovered I couldn't call the cat by saying, kitty, kitty, kitty. My lips and facial muscles seem to be partially paralyzed.

Last year, it was suggested that I might be a candidate for treatment with Botox injections to the larynx. My insurance would not pay for this. The ENT doctor said he could probably get treatment justified, but then decided the Botox treatments might adversely affect my swallowing. I think my age had something to do with this decision.

You might inquire about Botox. The treatments are supposed to provide relief for two to four months and then have to be repeated.

 

[Nighthawk]

@Old Dog:

As you, I was also offered Botox injections at my ALS Clinic, but to control excess saliva (drooling) caused by ALS.
Like you, my ENT adviced me against that procedure as it could adversely affect my swallowing by further weakening my swallowing muscles than they already are by the ALS itself.

It looks like somehow ENTs know better than the Clinic about the adverse side effects of the Botox injections.


Carlos

 

[Uptown]

The pain mgt doctor my neurologist sent me to wanted to shoot Botox in my neck, shoulders, back and between all the ribs. I have dysphagia anyway for the past 10 yrs from radiation and asked about the swallowing risks and he said don't worry it will only last for 90 days. My ENT told me I wouldn't be here to talk about it if I had done that.

 

[old dog]

Nighthawk - You are probably right. Would be interesting to hear if anyone has tried Botox injections in the larynx for either speech improvement or to reduce excessive saliva.

 

[Bad Balance]

Voice banking! I had forgotten that....thank you

 

[AKmom]

with my recent spasming of my right cheek and not being able to pronounce certain words (which I was thinking that it was because I was getting older), I had been wondering if this is my bulbar region being effected. I have pls for 20+ years and it has moved extremely slow compared to what I see most go through here. I do choke a little on soups and thin liquids if I am not very careful to take very small drinks at a time, and even then, I still will choke at times. A swallow test I had a few years ago said there was some slowing in the muscles that control swallowing, but not enough to worry about at that time. I do get hoarse a lot because its like something pinching my voice box, which might be spasms of the larynx? I also slur when I get fatigued. I think this whole time I have been not wanting to think it will effect my bulbar region, but I might as well accept it as a fact because I will need to prepare for if/when it gets worse.

So far, I have been able to work around all obsticles that pls has given me and continue to be productive, but if I loose my ability to talk, I am not sure how I can be productive as a travel agent without my voice. God is going to have to provide something here.