for you fellow "bulbars" out there with voice issues..

[vmd]

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]

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.

 

[vmd]

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]

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]

Thanks Letty,

I've used my finger before but not a spoon, I'll try it!

 

[patricia1]

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

 

[rose]

for Patricia

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]

Hii Rose What town are you in ?I can give directions to either one. Robert Wood Johnson has a good clinic for ALS

 

[rose]

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.

 

[olly]

rose

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]

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]

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

 

[rose]

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]

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

 

[rose]

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