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rose

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I wasn't really sure which forum I should post this on, and considered resurrecting an existing thread, but ultimately decided to start a new one.

Last evening I had the pleasure of a phone conversation with another of us on here with bulbar palsy.

I understand more clearly now why my doctors say that I do not have a classical presentaion.

My voice is so affected. I sound like a feeble old lady much of the time. Happily for us, and the success of the conversation, I was having a pretty good voice day and was able to project enough to be heard on the phone. Sometimes even that is a challenge.

She also did most of the talking, if it had been me saying that much, my voice would have gone down hill fast...I do have some slowness and hesitation when I speak, compared with before all of this, as I was a moderately fast talker. I do lisp sometimes, but I know its not overt. The more I talk, the more pronounced it becomes. Its like the specialists pick up on it, but it doesn't shout to everyone that listens to me that I'm not articulating clearly. - I don't think anyway. I run out of air when I talk, if I were to read this that I've written aloud, my voice would become increasingly quieter due to lack of air being pushed out.

In contrast, my mystery member (sorry, didn't clear this with her first, so no names) spoke slowly. Its true that some people just talk slower than others, but while with me, I talk a little slower, its more of a hesitant slowness for lack of a better comparison. I don't draw out how long a word lasts. I really didn't think she slurred that much, just a softer sound to consonants. I did not have trouble understanding what she was saying, or trouble hearing her. The quality of her voice sounded fine, although I couldn't truly know that as I've not heard her voice before.

So, its odd is all. I understand that my cranial nerves are screwed up, and that every area of my mouth and throat that can be affected is affected. I understand that my legs are weak, and there are even some dents appearing down at my ankles. I understand that no medication has helped me at all and it does not appear treatable, but, I for one, don't sound like someone with bulbar palsy when I talk. For whatever reason, the order in which this area is affected is not the norm.

And, what is it that regulates our speech patterns? Tongue muscle weakness aside ~ I've got "marked" weakness of the tongue, so that isn't the difference between us.

According to what my neurologist has said, the slow speech is UMN. But, from all of my reading on this forum, I'd always assumed that the speech slurring and slowing was something that occurred together, and was due to the UMN control of the tongue itself - causing the tongue to be weak and to move slowly because of the weakness. It didn't hit me until last night that the tongue is probably not the main player when it comes to changes in speed- that its not UMN weakening the tongue so that speech is slowed, but that UMN would cause the tongue to move slow, regardless of how much weakness there is. But weakness, whether it be caused by the LMN or UMN would contribute to clarity.

Thoughts?
 

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Hi Rose, as you know i have not been diagnosed with anything but wanted to post. I was reading your article when i got to the part about reading the post aloud i decided to do it. I started out fine and by the middle the back of my throat and jaw muscles started aching, i took big gulps of air at the end of the sentences. By the end of the post i was slurring my words like i was trying to say the sentences fast and get it over with but i wasnt, my mouth was just done cooperating! It took me until the last paragraph to sound like i was drunk! Hope you are doing well today, Sam
 

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Rose,

I don't have any answers for you, but I did want to let you know I am interested in this thread. The most bothering set of symptoms I am getting zero answers on involves my tongue and swallowing. My tongue will sometimes feel "stiff" and enlarged. From time to time it feels like something is pulling the underside of it. My swallow test showed that my esophagal (sp?) function was fine, but that I had coordination issues. Most of these seem to be with getting the tongue to cooperate towards the rear of my mouth, and that I can't really feel the area where food moves into the esophagus. Sometimes I am "surprised" by the feeling of food or liquid entering the esophagus, and it feels like I am about to choke.

My situation is different in that I do not have any atrophy or weakness.

I also do not, other than it stiffening up or getting tired, have trouble with tongue mobility. I can touch the back of my upper teeth, tent my cheeks, go side to side, and even make an "o" (and taught my daughter how to do it in the process). I don't have any noticeable speaking issues (though it frustrates me at stiff tongue moments, or when I bite down on the sides of my tongue). It does feel sore (especially at the back along with the throat), looks "bloated," and carries a white coating most of the time.

I don't want to derail your thread, but I'm curious to hear what others say, particularly regarding cranial nerve damage or other types of situations that can cause these sypmtoms.

Robert
 

rose

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Robert and Sam,

Yes, lets just see where this goes. As you know I've been told by my neurologist that this is bulbar palsy (in my case). I was still more hopeful that something else would turn up until the limb involvement kicked in - no pun intended.

Strictly speaking of my situation, this seems to be a good example of how widely this type of thing can vary as far as the order of things affected.

What prompted the post is my little epiphany that it must not necessarily be the tongue weakness itself, regardless of why it is weak, that affects speech. I knew slow = UMN, but didn't grasp that it didn't have to be caused entirely by weakness. I know my movements of my fingers are slow. When I type its almost like I'm in slo mo. The tongue must be the same deal. I used to play the piano, and was fairly accomplished. I'm sure it would be entertaining to hear me now, but not musically so. LOL ... However, its not like those that don't have use of their fingers due strictly to the weakness or paralysis , its a movement problem. It takes me a lot longer than it would have before to type, but all ten fingers still work.

I obviously don't have any answers for either of you. Robert, I've been told that I have "mis-coordination" with swallowing. I am supposed to be receiving my latest swallow evaluation in the mail because I need to take it to my gastro appointment tomorrow. Hopefully it will arrive in time. So if I read anything of interest with the mis-coordination part that might be helpful to you, I'll let you know for sure. BTW, I cannot even reach my cheeks with my tongue, I can only touch at the corners of my mouth inside a little.

Sam, the more I talk (or read aloud) the more stubborn my tongue is with cooperating, but the biggest thing is loss of volume. I am scheduled to see the pulmonologist at the Multidisciplinary ALS clinic in November. Maybe there will be some answers after that. My local lung doc is excellent, but he's said he's just not that familiar with my type of difficulties. And, even though my first (glib) response would be to say, "who is!" I'm hoping to be pleasantly surprised down at Hopkins when I go. They certainly were quite familiar with the problem I have with expiration as far as soft palate involvement goes.

Sam, your GP appointment is tomorrow, right? Now I want you to to imagine I'm right there in the room with you, and you'd better insist on that referral to Hopkins, because, just like Santa Claus, I'm going to know if you don't. Enough is enough. ;)
 
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BethU

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Hi, Robert ... I don't think this will help much as I'm way at the other end of the speech stuff, BUT ... that feeling of being surprised when something suddenly goes down your esophagus is exactly what I felt when I started emotional lability meds (Zenvia?).

After a year of delayed swallowing, when I started the lability meds, I'd put a pill in my mouth and it was INSTANTLY down my gullet. I didn't even seem to swallow ... or else, normal automatic swallowing had returned. This effect lasted for several weeks.

However, during this period (of getting used to the pills) I was having a LOT of choking and hacking and coughing while eating/drinking.

When I asked my neuro, he said the meds affect all of the functions in the bulbar area.

This effect has gone away, and so has the choking, thank heavens. I think now that my delayed swallowing (which is back), while a pain in the butt, is probably a protective reaction.

Just chiming in ...

P.S. my slurring started a year before the slowing began, I think. I speak like molassas in January now, because that's how my tongue moves. Like a snail.

I also have much more difficulty enunciating consonants that require action by the back of the tongue ... I can't say them, and almost twist my head off trying to get a "g" or an initial "c" out.
 

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I'll put my two cents in here and see if I can help

There are over 100 muscles that are involved with the entire process of speaking, which would include respiratory muscles, vocal cords (the vocal cords are actually muscles), the tongue, and muscles of the face, jaw and lips.

The main respiratory muscles are innervated by lower motor neurons of the spinal cord (i.e. spinal nerves) while all of the other muscles of speech are innervated by lower motor neurons of the brainstem (i.e. cranial nerves). Of course, upper motor neurons innervate all of the lower motor neurons.

The respiratory muscles are going to produce the "air" needed to speak.

The vocal cords produce the frequency (high-pitched voice, low-pitched voice, etc.) of speech, which is dictated by their tension. The size and thickness of the vocal cords is inherent in each person, which gives people deeper or higher voices . . . but the tension of the vocal cords will change that frequency.

The tongue and muscles of the face, jaw and lips are all considered muscles of articulation and allow for intelligible speech.

The different muscles have different jobs BUT they all have to work in a coordinated manner for speech to be normal.

When speech has become slurred, it is because some or all of the articulation muscles have weakened.

When speech has become too soft, it is mainly the respiratory muscles (not producing enough forceful air) that have weakened.

When speech has become husky, it is mainly the natural tension of the vocal cords that is lost (in other words, weakness causes a decrease in tension of the vocal cords).

Does that help?


Rose

You say your diagnosis is bulbar palsy: that is when the lower motor neurons of the brainstem have been affected. Pseudo-bulbar palsy is when the upper motor neurons have been affected (ergo the word pseudo). When you write about your symptoms, you say that you have upper motor neuron deficits. Is that what you have been told by your neuro or is that what you are assuming is happening to you?
 
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rose

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Wright,
I was hoping you'd see this thread :)

Here is the synopsis about my LMN versus UMN.

I asked my laryngologist about this just last week, and she was emphatic that the part of me that she was dealing with was LMN.

The EMG of my vocal cords shows LMN as did my tongue, but with my tongue it was only dirty when tested at the front/side a couple of months ago. The needle was not inserted into the back of it at all. Last spring, even though it was already beginning to atrophy, when the EMG needle was placed in the back of it, it was fine. Both my laryngologist and neurologist have noted lessening bulk to it since they've been following me. It is not midline when I try to stick it out, it goes to the right.

My neurologist notes UMN, changes in my speech pattern, my facial movements & facial weakness. She says it is typical of central 7th. (Finally I get something that is "typical" for a change LOL).

I'd thought that with my last visit to the speech pathologist, that at least they would have some input about how much bulk has been lost not only in places of my lower lip, but inside my mouth too. But no, it isn't something they see very often- like as in hardly at all.

Anyway, back to the UMN, my reflexes, slowed finger movement, slowed toe tapping - all the neuro says is indicative of the UMN. Which is weird to me, that because I have brisk reflexes I move slowly. She agreed when I asked about this, that it does sound contradictory, but makes perfect sense to her. Wright, remember a few months back my reflexes in the legs were normal.? Now they're not, they are brisk as well, and that cross detector, whatever it is, its brisk too. She said my overwhelming fatigue is UMN and also that I need to address the issue of sleep apnea. (they're coming out Thursday morning to set up the equipment) but I'm tired more than sleepy,...

I understand your explanation about volume being due to the vocal cords and/or respiratory muscles. I do have some bowing/atrophy to my vocal cords. - However, there seems to be more of a problem with me getting some oomph behind my voice than can be explained by that bowing. Plus, although most of it has been absorbed by now, I did have the filler injections into my vocal cords almost a year ago. It did nothing to improve my voice (which is unusual but happens) it helped a little, it seemed for a while with my velocity of air output, but never remarkably so, and could have even just been wishful thinking on my part. When I saw the speech pathologist a week or so ago, she also notes a decrease in volume of air as well as voice.

BTW, I added a photo of my vocal cords from the other week. It is in my lip atrophy album

I asked the speech pathologist if there was anything she could work with me on the be able to amp up my volume, and she said she did not want to do that until further evaluation by the pulmonologist at Hopkins, due to it perhaps doing more damage than good if they feel it will fatigue what already is weak.

And although my voice varies in quality from day to day (yesterday = good, today not so much, plus I've got the double reed sound going on today at times.) In the big picture it has been a downhill slide from the start. At this point none of the doctors really care a whole lot about the quality of my voice, or appearance of my lips for that matter, as these are not safety issues. Which I understand. but still....

Here is a question for you. Are the respiratory muscles used in a different way, whether it be sequencing, or whatever, when one is simply breathing out rather than speaking? I do have a reduction with just expiration, but not as marked as when talking.

thanks for responding, :)
 
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rose

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Wright, RE: the bulbar as opposed to pseudo... the neurologist says that I have bulbar palsy. She has also called it progressive bulbar palsy. She said that the "bulbar palsy" was as much a description as to what is wrong with me as it is a diagnosis. She said it is probable MND and she feels I am in the early stages of this, which of course would be bulbar onset of ALS. Regardless of if LMN has spread to my limbs or not, she does not foresee me recovering and returning to work.
 

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All of this information is really helpful. I have wondered if my difficulty swallowing might have something to do with the muscles of my neck and jaw (thank you for the brief anatomy walkthrough Wright). I have found that apply pressure to the base of my throat (in that soft area above the breast bone) that my swallow feels more "normal". I have wondered if the change in my swallow sensation has anything to do with the muscles that surround my throat not putting the normal amount of "pressure" on the esophagus. Does that make sense?

For a few months now I have had feelings of constant strain in my neck and shoulders. Its like its an effort to hold myself upright. When it first started my neuro thought it was neck strain from a desk job (and it might still be). However I was never able to resolve it with PT/OT. Now I really feel it at the base of my skull and in my shoulders. I used to pride myself on my ability to swallow horse pills with no water (Not necessarily smart, and certainly ornery as I used to do it while teasing my wife who is a pill crusher). Now my throat rebels at the idea, along with foods like peanuts.

I guess I am looking for information on what could be causing the tongue symptoms. I made the mistake a reading another bulbar related thread where the feeling of an enlarged tongue and issues with the back of the tongue came up. I have tried to find my zen space, but some of the descriptions were too close to home... The facial stiffness and dry eye doesn't help either.

Robert
 

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As much as I'm biting my lip, I'll go on and jump into this thread!

Yes, it's true, I am the mystery forum member that rose is talking about. That is so kind of her to post that she could understand me! When I went to the ALS clinic today, they could also all understand me. I tried to tell them I don't know if I have compensated for the changes, or what, but I really do talk much, much slower. BTW rose-if you could have heard me a year ago, you'd be begging me to shut up!

And my story with the weird tongue things-I noticed today that I can't run my tongue across the front of my top teeth- like the lady in the old toothpaste commercial I think. It just seems weird.

I hope to keep talking like a town drunk for a long time, and yes, dear rose, I will talk to you soon!

Never give up,
Never let up,
Never lose faith,
brenda
 

wright

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Rose

The main muscles of respiration (the diaphragm and external intercostals) simply contract and relax to move air into and out of the lungs . . . and therefore . . . across the vocal cords. The muscles will not do anything "special" during speech. Speech will be affected if those respiratory muscles don't contract and relax properly. It's actually the relaxation of the muscles (which is normally a passive process) that causes air to move out of the lungs (i.e. exhalation) and thus will allow for speech . . . although noises can be made when we inhale as well.


Robert

Neck and shoulder muscles are not involved in the swallowing mechanism.

Your maneuver of putting pressure on the front of throat to help your swallow "feel normal" COULD be having the same affect as tilting your head down to help the swallowing mechanism (i.e. if someone has trouble swallowing) . . . which causes the tongue to fall down properly and the epiglottis (this is a flap of cartilage that naturally covers the larynx when we swallow so food and liquids aren't aspirated into the lungs) to fold over the larynx (the larynx leads into the trachea and the trachea leads into the lungs) properly.

That is just one possibility. Do you ever feel like you have a lump in your throat?
 

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Wright,

I did have a lump in my throat feeling when I first began to have swallowing difficulty earlier in the year. Now its more of an itchy "about to cough" sensation (with accompanying peristant dry cough) and a feeling that I can only describe as similiar to having a necktie too tight. When I go through the motions of swallowing, its like I can't feel the "gulping" sensation.

Would it be worth while to make a trip to the ENT to have him take a look?

Thank you for the information,

Robert
 

rose

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Wright, The intercostal muscles is the terminology that was used at my last visit. Never heard of them before. I tried google but didn't know the spelling, and pretty much forgot about it until reading your post. ... Oh, air escapes through my nose when I talk too (which I guess it is not supposed to) because of my soft palate problems.

Everyone feel free to continue this thread. My main purpose in posting it was just my own little revelation that the slowness of speech and/or slowness of tongue could be a separate cause from weakness.... i.e. taking the concept out of the bulbar region, my fingers move slowly, but whether or not they are weak is not the reason for the slowness. (unless I'm wrong, if so I need "Wrighted".)

Brenda, you're a dear. I'm glad you got back home safely. Its good that you have that nursing degree (soon to be a second degree) to fall back on, now that you're no longer a candidate for being the new toothpaste lady... As in don't give up your day job. :cool:
 

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Rose

The slowing of your fingers is due in large part to upper motor neuron problems. This could hold true for muscles of speech as well (they too have inputs from upper motor neurons). This however would be considered pseudo-bulbar in nature (i.e. dysfunction of upper motor neurons that innervate the lower motor neurons of the brainstem).


Robert

I think given your wide array of signs and symptoms, I would try to go to many different specialists until they find-out what on earth is going on with you.
 

rose

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Wright, OK so I was "wright" too :) Maybe that is why my speech isn't as slowed, as at least in the bulbar area I have seemingly more LMN, - I know my doctor has observed an almost completely absent gag reflex, and that would be LMN....

I just got back from my gastro appointment. And, he said he's obligated to look down in, just to make sure there is nothing "structural", but does not expect to find blockage, thinks its my damned 10th cranial at work, or rather should we say, not at work. I asked him if it is indeed that, is there anything that can be done, and he said other than diet alterations and eating techniques not really. (of course) He said that a consistency of honey, yogurt, applesauce, etc is actually easier for the esophagus to move down properly than thin liquids like water. .who knew?

Robert, the gastro was telling me about a test that maybe would show something with you. (I wasn't telling him about you LOL) He said it was different than a barium swallow, a tube is fed through the nose, and somehow there are sensors (didn't get exactly how) and small amounts of water are fed down through the tube, and they can tell how strong the contractions are that move it down, etc. At this point I don't think I'm in for this, just the scope.
 
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