Speech Question

[BlueandGold]

This may be a silly question but I've noticed that if I'm by myself most of the day and don't talk that my speech seems to be a little better when my wife comes home in the evenings. On the other hand, on weekends when I have a lot of family around me and there is a lot of conversing my speech steadily gets worse and by evening it is very difficult to talk at all. So I'm thinking I'm wearing my tongue out by talking so much which brings me to the question; if I do very little talking will my speech last longer? I just want to hang on to it for as long as I can

Vince

 

[Nikki J]

The worse as the day goes on if you are talking a lot I absolutely saw with my sister. I suspect that not pushing it might preserve things a touch longer. Just like we are told not to overexert the rest of our bodies. There is some thought that nuedexta MIGHT help preserve speech and swallow a bit. Neil found it helped his swallowing I know. If you are not on it consider it. It is indicated for emotional lability and you may need to have that symptom to have it covered. Of course never lie but emotional lability as you probably know involves excessive or inappropriate laughing and or crying. ( you may be told though crying is normal). Btw nuedexta is another expensive med

 

[MaxEidswick]

>There is some thought that nuedexta MIGHT help preserve speech and swallow a bit. Neil found it helped his swallowing I know.

me 2 (maybe)

 

[gooseberry]

Also if you are having breathing issues, as you become more tired thru the day your voice quality may change. It may be more difficult to talk and get air or your voice may sound weaker or more raspy....sometimes thin and higher pitched depending on what is happening.

 

[affected]

In the early months Chris found that his slurring was definitely worse at different times of the day and seemed linked to 2 things - cold and fatigue.

As he was experiencing both tongue wasting and wasting of the facial muscles, it meant that the muscles that did work had to work harder and so his speech would deteriorate and seem to come a bit better. He never stopped slurring but yes it was worse at times.

As he progressed however, his speech simply became worse and stayed that way all day with only slight differences from fatigue.

I would suggest start trying out technology as soon as you can so that you become familiar with text to speech apps before you need to rely on it all the time. That will save you overusing the failing muscles and have you confident with the technology as quickly as possible.

hugs

 

[BlueandGold]

Thanks for the advice. And Tillie, my wife and I were just discussing today that we should probably go ahead and look into speech devices before we need them! Cold really adversely affects me as well. Can't stop my teeth from chattering and seems like all the muscles in my jaw and neck instantly get tight when it is cold (or just chilly).

I know all this is inevitable and we need to prepare, prepare, prepare. But sometimes it is really nice to forget this crap for a little while

Vince

 

[swalker]

I really encourage your to bank your voice NOW if you are interested in having the SGD speak with your voice.

I used ModelTalker, but there are others to consider as well.

Steve

 

[affected]

Vince, Chris was the same.

The 'chattering' is jaw clonus. We didn't realise this til the day he was diagnosed and the neuro produced the 'chattering' with his little reflex hammer and got another 5 doctors to come watch and have a go.

Yes, the cold will make a difference too. When he still had use of his hands, in the winter he would get up and barely be able to use or move ,them, and his teeth would chatter away. Then as the day and he warmed a little his hands would start to work again, though with clinical weakness, at least he could move them and the chattering would stop.

Many months before diagnosis, even before he was slurring, his teeth would chatter even if a warm breeze hit him. He began grinding his teeth at night and biting the insides of his mouth. Then the problems swallowing water, slurring and emotional lability all kind of kicked in within a couple of weeks.

 

[notBrad]

I've started on Nuedexta and definitely notice an improvement. I actually did a little experiment on myself prior to getting it prescribed. I purchased an OTC cough syrup that had Dextrmethorpan in it and tried it for a little. I did notice an improvement (although it didn't last any longer than it took for my system to pass it through).

My $0.02

 

[BlueandGold]

I guess I'll have to tell my neurologist at my first clinic visit that I'm having emotional problems because when I asked him about it he said it was only for the uncontrollable crying or laughing. If I could even have a day when my speech was improved I would gladly take it!

Thanks to all who responded. My wife and I celebrated our 30th anniversary today. Bittersweet as she just couldn't stop crying.

 

[cheerleader]

Another example of the people who live this disease knowing more than doctors! Blue and Gold, please google nuedextra and speech- several articles come up,including some about trials for ALS/speech issues. You might want to take them in and share with your neurologist!

 

[Nikki J]

The neuro may or may not know the research. He might have been saying that insurance will only pay for it for emotional lability It is often on the insurance's prior authorization list and if there is not emotional lability in the medical record so the doctor can check the box it will be turned down.
Congratulations on your anniversary Vince. Sorry it was a tough one

 

[tripete]

I experience exactly what Gooseberry related and have for a year now. The only difference is now my breathing wears out from the smallest effort, and my voice gets weak and high pitched with it.

 

[BlueandGold]

Wow, Nuedexta is $680 even through goodrx. Guess I'll have to wait until I get Medicare.

 

[Nikki J]

What about your insurance Vince. I know they did not help much with riluzole. At least find out insurance price. In the mean time consider trying dextromethorphan some people have found a mild effect with that. It is one of the components of nuedexta