Hoarsness is here to stay...

[AKmom]

I have for about a year now, had bouts of hoarsness that would mainly show up if I had a busy day of talking. And as I fatigue, I start to have problems with pronunciation. So now, about a week ago, my hoarsness has been around for longer periods, including when I wake up. Clearing my throat does not help. I pretty much have a continual tight feeling in my jaw and throat, as if spasticity is going on.

I found out that hoarsness can be part of pls. So I guess this is a new thing for me to adjust to. I am hoping I am a long way off from having to deal with total loss of voice. Anyone else at this stage of your progress with pls?

 

[olly]

Hi joyce,sorry to hear about your latest progression.
My bulbar symptoms have been progressing with shorts times of platau for about 7yrs.
At this stage even in the morning when not tired and throughout the day my speech goes slurred at times, my son picks up on it more than i do.
If throat spasms are active my voice can sound strangled and i ofton get the wet voice after drinking.
Regards drinking,when i do now sometimes liquid shoots back up and up my nose.........very painful.

I think with you being a slow progresser like me it will be a long long time before you will loose your speech.
Try not to worry too much,consentrate on day to day life.
(((hugs)))

 

[Tokahfang]

I got there back in 2010, I think, Joyce. I found that as long as I was measured in my speaking, I was able to function for a while. Once I did start using a speech device, I used it to moderate my voice usage so I could have it for phone conversations and to talk to my dog. (My dog never did learn that the computer voice is me!) Church was the biggest obstacle to moderation for me, so many chatters.

I agree with Olly, I think you'll be talking for a long time.

 

[AKmom]

I do hope that this too is slow progression. I have been choking on thin liquids for several years now. That has progressed to choking on more solid thing too occasionally. I have to eat slowly and be careful to take smaller bites. Soups are particularly difficult. I use to love to order soup during dinners on a cruise ship, but I had to stop because its a sure fire choke fest that becomes embarrassing quickly.

One thing I have also noticed is that everyone must be going deaf because they keep asking me to speak up cause they cannot hear me. So it feels like I am having to put more effort into my voice. I feel like I am yelling. That also makes the hoarsness get worse.

 

[old dog]

I lost my voice rather quickly following diagnosis. However, I may have been having speech problems for years. At age 18, speech therapists at the college I attended said I had a speech malfunction, but it was not considered serious enough to treat. My speech pattern has always been slow and somewhat unusual. People I hadn't talked to in 10 years would recognize my voice on the phone immediately.

It is my theory that in my case PLS is probably genetic, but it required a certain chain of events to trigger it to become disabling. (overdose of medication, stress, a bad case of flu, a chemical burn, etc.) You may never lose you voice. I wish you luck.

 

[olly]

I must admit my voice is not as strong as it used to be joyce,alot quieter.
I loved singing but for some years now i find i can't,my voice breaks up....i sound like i'm singing in morse code lol.
Dont know if you or beky find this but if im talking too much at once i find it tiring physically with my lower facial muscles and mouth....could be because my lower facial muscles are weak.

Choking has not been too bad its more food gets stuck at the top/back of throat and it wont go down without a fight.
As for liquids,theres definatly something hyperactive going on causing liquids to shoot back up and up my nose when i swallow.
This happened yesterday morning with my hot coffee,my nose has been very sore inside since.
My pain in the butt with bulbar issues is the jaw and chewing muscles,i think its only a matter of time before i will be nolonger able to chew and on a liquid diet...i keep persevering as i love my food lol.

For me the bulbar issues have been far more distressing than the body symptoms....i can cope with the bad leg spasms but when the jaw spasms get bad i just want to not be here anymore.

 

[AKmom]

caroline, I can sympathise with having a spasm in the jaw. I hate the ones that happen under the tongue. They hurt the worse! I sometime notice that my jaw is so tight from spasticity, that my teeth hurt. this happens during the day mostly if I haven't taken a baclofen. I am needing to go back to my higher dose of baclofen, but because of no medical insurance, I have been hoarding of sorts and taking them mainly at night. We do get them at a 30% discount, which helps. Lukily all the meds I am on are the older meds that have been around long enough to be cheaper than the newer drugs. So most are rather cheap.

I also get tired singing at church. My voice will get really hoarse before its over and it makes it difficult to talk at all after that. Well, it is what it is. And this too will be a hurtle to have to overcome. But so glad I have a group of friends that can relate with me!

 

[04grace2]

I've only replied once before, but I read the threads often. This one particularly caught my attention. I am experiencing a lot of the same things. I have noticed the hoarseness more often lately. I find that singing at church triggers my jaw spasticity, too. I often have trouble opening my mouth completely to eat and feel intense fatigue while chewing. I used to have a lot of problems with swallowing, but the Baclofen seems to take care of that most of the time. Lately, I have been experiencing spasms in my neck muscles that often trigger migraines. I can actually feel the muscles in my neck quivering, then the stiffness and pain starts. My doctor said that the quivering feeling is part of the spasticity process. I feel it quite often in my legs. I was wondering if anyone else has trouble with neck muscles. I often feel that I need to prop my head in my hands to hold it up a bit. It is probably because the muscles are fatigued from the spasms. I, too, have been hoarding my Baclofen a bit to save money. I am thankful for the people here in the forum. It has helped me a lot.

 

[AKmom]

Hi grace,
I get the neck quiver and cramping too. The cramping pain part usually doesn't last as long for me but the tight quivering can last for hours or days. I do get a headache from it. The tightness in my neck is pretty much daily and I find if I take the baclofen like it was prescribed, then my head will start to slide down to one of my shoulders. To the point that my ear will be touching. This is why I think that some spasticity is good and take much less baclofen then the doc prescribed.

 

[Nighthawk]

Sorry if this has been asked before but, by "hoarseness" with your voice, do you mean like slurred speech just like PALS with Bulbar onset experience?

Thanks in advance for your reply.

 

[AKmom]

Spurring caused from muscle weakness is different than the spasticity or constriction of the muscles that control the larnyx. The hoarseness is like having a permanently placed 'frog' in your throat. The more you talk, the tighter the muscle get thus causing the voice to cut out at times too. No amount of clearing your throat will make it go away. Since pls effects only upper motor neurons, the signals to relax the muscles do not seem to get through, yet the signals to contract are getting through. Weakness from speaking will happen as the muscle fatigues on its own from being overworked. Thus slurring of words from a pls'er is slightly different than a PALS.

 

[Nighthawk]

Thanks very much for your explanation.

So, I take it's different when the Bulbar muscles (the ones involved in speech) are being affected by damage to the UMN that when they have been affected primarily by LMN damage.

So, I imagine a tongue of a person with PLS should look spastic whereas someone with predominant LMN damage, his/her tongue should look kind of flaccid but weak.

 

[AKmom]

Not that I have seen the two side by side, but I would imagine so Nighthawk. I do not have any atrophy going on in my tongue but my tongue seems to be swollen looking with huge wavy edges and a deep crack in the middle. Not even sure if that is related to pls, but I know the spasms of the tongue is.

 

[Tokahfang]

Actually, Nighthawk, the UMN region that contributes to speech most is called the "pseudobulbar" and is what most PLSers lose control of. We get spastic dysarthria (either abductor, adductor, or a combo of both) and can go entirely "anarthric" (mute isn't techically the right term, but mute, heh) without ever losing our tongue function. Much more often than losing the ability to form words, more often we lose the ability to make sounds, especially controllable sounds.

All that said, psuedobulbar does hit the back of our tongue eventually too, thought a spastic tongue often doesn't look like anything special. It just doesn't do what you wanted while not looking droopy. And that causes slurring, but you have to be fortunate to not become too dysarthric to even notice by that point. I've met someone who had that situation, which was rather comical - she got around her disability by texting and I didn't have the hand control or sight to use a cell phone in text mode. We cheerfully had to agree that despite our close geographical ties, we were not really set upt to hang out, heh.

 

[AKmom]

You explain it much better than I do Beky! Thanks!