View Full Version : for you fellow "bulbars" out there with voice issues..
I know there have been several threads that have included the discussion of voice change with eating or drinking. For the most part, until very recently, I hadn't noticed that much of a change myself ~ not nearly as much as just using my voice in general. However, I have had more voice quality issues early on than most. The last week or so, that's changed, Can hardly talk during/after eating or drinking. ... So, I mentioned it to my laryngologist's assistant today. I'd called to let them know that the social security office would be contacting them about disability, but when I told him about my new problems with voice change, he called me back, and said she (my laryngologist) wanted to see me. So.... I go in Friday. I don't know how many on here other than I have a specialist that just deals with the throat and voice, so I wanted to pass this along, and will let you know after I go in, if the latest development is of any significance....:)
Sammantha
07-22-2008, 09:59 PM
Hi Rose, i hope your appointment is helpful to you........... I am sorry that it is progressing. I am going to Duke on friday, its a three hour drive from where i am. It's practically a straight drive though. I hope they can give me some help also. Well good luck and i love ya lots, your friend Sam
fiddleplayer51
07-22-2008, 10:50 PM
Good luck, Rose. I'll be thinking about you on Friday and awaiting a full report afterwards.
Take care.
Jane
BethU
07-22-2008, 10:51 PM
Hi, Rose ... good luck with the laryngologist. I'll be very interested in what you learn. My voice has gone through a thousand changes in the last year, usually hitting three or four different registers in the same "conversation," from growling to squeaking, but now it's been settled at a high, nasal childlike pitch for a couple weeks.
It's not crackling as much as in the past, either, and today I was able to argue for an hour with a case worker for a foundation that had said they would help pay for Rilutek and then changed their mind. Usually I start choking or coughing after 5 or 10 minutes of talking, but not today. The insurance also stopped paying part of it, as I have hit the "donut hole" in prescription coverage, so I'm stuck with the whole $900 per month if I continue.
I was really p***ed at the guy. Maybe a little hostility helps ALS symptoms, as I had no problem communicating, bad as my speech is!! He told me the budget I had submitted to the foundation was too high ... he wanted me to stop spending money on art supplies ... and I told him I had no intention of giving up any pleasures that I am still able to enjoy, just so I could have his crummy money and live an extra three months.
We parted friends, and he is going to present my case to the foundation again and we'll see what happens. But I told him it's fine with me if they pay, and it's fine with me if they don't, and I mean it. I will not mind giving up Rilutek at all. I'm not going to use up all our resources just for three months extra life, as my husband is going to need a lot of care when I'm gone, and I need to hang on to the resources he will need.
It's amazing how your priorities change and you stop sweating the small stuff with ALS!
Good luck,
BethU (glad to see your beautiful painting again!)
it's so upsetting to know you are getting worse.
i think of you everyday but will even more so on friday.
i hope it's nothing too bad and everything goes ok on friday.
godbless my friend.
caroline
patricia1
07-23-2008, 10:30 AM
I know there have been several threads that have included the discussion of voice change with eating or drinking. For the most part, until very recently, I hadn't noticed that much of a change myself ~ not nearly as much as just using my voice in general. However, I have had more voice quality issues early on than most. The last week or so, that's changed, Can hardly talk during/after eating or drinking. ... So, I mentioned it to my laryngologist's assistant today. I'd called to let them know that the social security office would be contacting them about disability, but when I told him about my new problems with voice change, he called me back, and said she (my laryngologist) wanted to see me. So.... I go in Friday. I don't know how many on here other than I have a specialist that just deals with the throat and voice, so I wanted to pass this along, and will let you know after I go in, if the latest development is of any significance....:)
H i Rose I have had those issues for a while
While eating I cant talk because my speech is so much worse the drinking is even very badI NEVer mention it to my Neuro I am curious what she going to say I am sure it is part of Bulbar. \Pat1.
brendapals
07-23-2008, 10:50 AM
Rose,
I'll keep you in my prayers on Friday.
Now that I have been on Rilutek and lithium for 3 weeks, I have found that I most definitely CANNOT talk and eat at the same time. I guess that holds true what our moms would tell us "don't talk with your mouth full"- anyway, the one thing I have noticed BETTER is that I haven't gotten choked in 3 weeks.
That could be because I have learned to EAT SLOWER, I don't know. It is really scary to my kids the times I have gotten choked. Now even if I cough, which I can't do very well, my 7 yr old asks if I'm OK.
It is a journey you do not have to face alone, and I'm thankful for that. This forum has certainly left a mark on my heart and I look forward every day to getting on here!
Enjoy your week!
Keep the faith,
brenda
PDaddy
07-23-2008, 11:10 AM
FWIW - I'm finding bits of food hiding in my upper gums for later. It seems my tongue isn't taking care of that the way it used to. Rose, let u know how Fri's appt goes!!
CindyM
07-23-2008, 08:59 PM
Yes, good luck Friday, Rose.
Thank you all so much! It makes me feel like I've got a whole team cheering for me. And, yes, I definitely will let you guys know what she says, that's really the main reason I posted it as I feel very fortunate to have a doctor who's field of expertise is just the throat and voice. It isn't that common of a medical specialty I don't believe. ... Brenda, you're so funny, yes, our mother's were right, but I wonder if your meds have a correlation with that or not (?) or if its coincidental, and yeah, PDaddy, the food in the mouth is so annoying (and gross) it sticks to my teeth too and I always have to go rinse after I eat, (I joke and say I could have a snack on whats left over in my mouth from just about any given meal) and lately even rinsing isn't doing such a good job, I think my "swish action" ability is declining. Pat, I remember you talking about the drinking/eating affect on your voice, and that is why when it started to be more noticeable for me that I didn't think that much of it, I was kind of surprised that my doctor wanted to see me, but maybe we'll all learn something from this (or not, sigh) ...
I really love my laryngologist, and when I was writing down my medical history for my social security interview, I realized that she is the one that ordered the vast majority of tests that actually were useful in determining what was going on with me. She is the first doctor of all I'd seen that had a clue from the start as to why my voice was messed up, and the first to mention the possibility of cranial nerve involvement. I feel really bad for her that its turning out that I'm so sick, as I think I was one of her very first patients after she started practice when she completed her fellowship! Take care everyone, I will post after my appointment. :)
PDaddy
07-24-2008, 12:50 PM
Rose, I hope it goes well tomorrow, really! As far as the food stuck against the teeth or gums, its kinda like, sloppy seconds! :-) During our vacation last month, sitting at a picnic table I tried swishing some water in my mouth to help clear some of those "seconds" and water squirted out of my mouth! I almost got my daughter wet, ewwwww.
i will be thinking of you tomorrow,i hope the news is not too bad.
i so know about all the left over food in the gums,teeth and back of the throat.
i dont like to eat and talk after as i feel self conscious about any visiable food stuck anywhere.
take good care.
caroline:)
Okay, I'm back from the laryngologist appointment. From what I can understand, the voice deterioration from drinking or eating is significant because (now this is just put in my limited lay vocabulary) when we swallow, not only are our vocal cords supposed to close, but there are these "false" vocal cords, which are a pair of thick folds of mucous membrane that sit just above, and protect the true vocal cords For anyone that has had the opportunity to watch a laryngoscopy, the false cords are pink like the rest of the interior of our larynx but the vocal cords themselves are white. When we swallow the false vocal cords are supposed to close all the way too, they act as a barrier and thus protect the true thin and more delicate vocal cords. I think this is their main function as the false vocal cords don't really have much effect on the way our voices sound ~ I really hope I'm explaining this correctly. So, she said it is a penetration issue, that it was an indication that liquids are able to come closer to entering my windpipe, if drinking affects my voice quality.
Edited to add....
I think this is another scenario where its important for our doctors to determine, if we have choking trouble, whether it is caused by weakness, as in liquids being to pass through the false vocal cords and, obviously the true vocal cords into the windpipe, or whether there are laryngeal spasms which would keep the vocal cords from closing properly, or whether it is a lack of coordination. There's a lot going on in the old larynx apparently! ... and that modified barium swallow test (which is currently being discussed on another thread) was a test that showed I do have "slippage" where liquids do start to go down my throat without me swallowing, so, if I ( or anyone) isn't actively swallowing, their vocal cords are open because they're breathing!
She doesn't want to wait until I go back down to Hopkins for more EMG testing. She, in tandem with a neurologist at Mt Sinai, do laryngeal EMGs once every month, and she thinks it best I come in for the August EMG date (which is I think the 28th) and she wants to re-test my vocal cords, do my lip, tongue, and I guess anywhere else they decided could give some clear cut answers. (Oh yay, more needles LOL) :)
i don't know much about how the throat works technically but even i could understand your explanation,well done lol.
i guess this is not good news and i find that so upsetting.
i just pray everyday that real soon a cure is found so all the special people in the world and on this forum don't have to suffer anymore,we have to have hope.
godbless rose.
caroline:(
i don't know much about how the throat works technically but even i could understand your explanation,well done lol.
i guess this is not good news and i find that so upsetting.
i just pray everyday that real soon a cure is found so all the special people in the world and on this forum don't have to suffer anymore,we have to have hope.
godbless rose.
caroline:(
.... I just hope I really did explain it correctly. And yes, we all do have to have hope. Even today, my doctor's assistant was kind of frustrated that I'm still in many ways in "Limboland", and he said, so the doctors at Hopkins aren't looking for other causes than ALS, but won't say you have it, so its either ALS or something that is not yet in medical journals, maybe its the other. It was very sweet of him.
I meant to add that my doctor also wants me to meet with a speech pathologist for some swallow therapy. I'm trying to find out if I can just go to Hackensack med ctr, rather than having to drive all the way into New York, don't know yet...
Rose:
What is the outcome of all this testing? I mean, do they have specific techniques that can help you swallow more effectively, etc?
Rose:
What is the outcome of all this testing? I mean, do they have specific techniques that can help you swallow more effectively, etc?
I don't know. When I met with the speech pathologists for the modified swallow test, they were emphatic that I keep in touch as they would be able to help me as my condition (presumably) progressed. During that appointment they advised me to eat a bite, drink, eat a bite, etc. To tilt my head forward when swallowing. Today, my doctor also mentioned thickening agents, but this is only effective for some people, depending on why they choke. I'm curious to know what else may be suggested. It was too late in the day by time I got home to try finding out if there is someone I can go to on "my" side of the Hudson. I really liked the speech pathologists that saw me at New York Eye and Ear, but its exhausting going into the city (I'm so close, but yet so far away! we actually have a view of Manhattan from our windows at home) if I can get someone in Jersey instead, its going to be preferable just due to wear and tear on me.
I hope you find someone in Jersey. I would also be curious as to what the doctors suggest. That way, I can get free medical advice here! ;)
letty
07-25-2008, 09:06 PM
PDaddy,
My hubby's Dr. told him to use a spoon to clean his mouth out after eating since his tongue can't do it anymore. It seems to be working. Letty
PDaddy
07-25-2008, 10:06 PM
Thanks Letty,
I've used my finger before but not a spoon, I'll try it!
patricia1
07-26-2008, 09:12 PM
I don't know. When I met with the speech pathologists for the modified swallow test, they were emphatic that I keep in touch as they would be able to help me as my condition (presumably) progressed. During that appointment they advised me to eat a bite, drink, eat a bite, etc. To tilt my head forward when swallowing. Today, my doctor also mentioned thickening agents, but this is only effective for some people, depending on why they choke. I'm curious to know what else may be suggested. It was too late in the day by time I got home to try finding out if there is someone I can go to on "my" side of the Hudson. I really liked the speech pathologists that saw me at New York Eye and Ear, but its exhausting going into the city (I'm so close, but yet so far away! we actually have a view of Manhattan from our windows at home) if I can get someone in Jersey instead, its going to be preferable just due to wear and tear on me.
There are some speech therpist in Robert woods als clinic in brunswick NJ and mrs Demarco in Hunterdon Hosp,Flemington NJ
Thank you, fellow Jersey girl :) ~ actually I'm a fairly recent transplant, so now I have to go to google maps and see where Flemington is LOL, However I'm also going to check Hackensack as I've even been there a few times.
patricia1
07-27-2008, 09:17 AM
Hii Rose What town are you in ?I can give directions to either one. Robert Wood Johnson has a good clinic for ALS
Just a thought... that feeling of having a hair stuck in the back of the throat?... I think its that same vibrating sensation that we get elsewhere in the body. At least, to me, when I try to analyze it, it is a very similar sensation.
that is so wierd you mentioned the hair in the throat feeling,i mentioned this in a post a while ago but no one answered.
i thought it must have been in my head:lol:
it comes and goes but it drives me crazy when its there.
take good care.
caroline:-D
brendapals
08-17-2008, 10:41 AM
Hey there,
That's weird, just this week I told my family I felt like I had a "hair ball" in my throat! I didn't know any other way to describe it.
But I also couldn't get a deep enough cough going to get it out! Guess I better take some lessons from the cat...
hugs to all,
Keep the faith,
brenda
coolr
08-17-2008, 01:22 PM
Letty and Pdaddy---Way before ALS, I was using an oral irrigator because of the spacing of some teeth. Using this ,you can squirt water between the teeth and along the gums. I takes some patience getting used to it, but I would not like to be without it now and use it several times a day.
Ruth
About the hair thing (as we have a few topics going in this thread) I would have sworn that I had a hair stuck down my throat, it doesn't happen all that often, but when it does, its sooooo annoying! I've had a lot of the vibrating (as lovelilly called it "purring") going on in my feet and legs lately, and that is when I made the connection. ... I've not had the lump in the throat sensation that some describe though. In fact, I think my bulbar area has stabilized somewhat. (we'll see how true that turns out to be when I have the laryngeal/vocal cord repeat EMG, and another swallow test later this month, sigh) The big event in my little world is the sudden problems with the legs. Lots of fasciculations, even above the knee in one leg, coupled with an aggressive, progressive weakness. Which would be not so bad, sort of,in a weird way, if I didn't see some things going on in my hands too. This monster needs to settle down and figure out where it wants to go to eat away at me, and leave the rest alone for a while! :-?
BethU
08-17-2008, 08:08 PM
Oh, Rose, I hope it settles down, too! There seems to be no rhyme or reason to this thing.
I am finding that strange things happen for a couple months, and then go away. Like weakness and pain in my shoulders and the back of my neck for three or four months this spring, had me lying on the floor for an hour each afternoon to ease it. It was really painful. Then it disappeared completely. And my swallowing suddenly got very much better for the last two months ... I was afraid to mention it, in case I jinxed it ... now this week, I'm choking and coughing again.
I'm sending serious vibes from La-La-Land to tell that monster to slow down and leave you alone!!
BethU
Oh, Rose, I hope it settles down, too! There seems to be no rhyme or reason to this thing.
I am finding that strange things happen for a couple months, and then go away. Like weakness and pain in my shoulders and the back of my neck for three or four months this spring, had me lying on the floor for an hour each afternoon to ease it. It was really painful. Then it disappeared completely. And my swallowing suddenly got very much better for the last two months ... I was afraid to mention it, in case I jinxed it ... now this week, I'm choking and coughing again.
I'm sending serious vibes from La-La-Land to tell that monster to slow down and leave you alone!!
BethU
Beth, thanks, I understand about not wanting to do the jinx, I almost didn't post that my swallowing etc isn't so much worse lately! I'm sorry to learn that you're having more difficulty again. and, BTW, ( I should be messaging this, but am pressed for time) tomorrow we're going to the Strand bookstore in NYC. With your background you've probably heard of it. I'm looking for a writer's guide while there. This is so funny that we're making a special trip in. Don wanted to take me to a baseball game (both New York stadiums are closing after the season is over) but no one is playing a home game tomorrow. However, last winter he lost a Super Bowl bet with me, (again!) and I chose a trip to the Strand in lieu of our standard 5 bucks. :) He's a reader too, so its not like its going to be an unpleasant way to repay a debt 8-)
i most definatly think this is umn related.
even though we feel it as a sensory symptom i know it is not.
when i had my ncv i was sure it would show up but it did'nt.
i think it could be related to the clonus/hyperreflexia or spacticity as these seem to be worse when the vibration feeling is stronger.
i could maybe show up on a mr spectroscopy as this evaluates umn dysfunction.
however this machine is not used to dx and is not readily available in hospitals,at least in the uk.
from research i have found it's used in trials or rarely to follow progression.
rose,i hope you enjoyed your day out. you can't beat a good book.
take care everyone.
caroline:-D
brendapals
09-03-2008, 10:36 PM
Hello my friends,
I thought I would jump in on here, since it's a voice issue. Got a message from my sister-in-law today that she had shipped the "Dynavox" to my house and it should arrive on Friday. It belonged to my brother who was dx with ALS in 2003. He died in 2004 and I guess it was just laying around the house.
I have no idea what to expect, but I'm sure my teenagers can teach me how to use it very quickly! Maybe I'll get the sexy Mae West voice I've always dreamed of?:mrgreen:
Cross your fingers!
Keep the faith,
brenda
BethU
09-03-2008, 10:58 PM
Great! Let us know how it works. I've called the speech path about mine, and she said it's sitting there waiting to ship, but they're waiting for Blue Shield to let them know how much they will pay. I am really motivated to get going on it.
BethU
