aspiration....

[rose]

Brenda,

No no, absolutely not,Iit never occurred to me to be hurt or take offense. I loved the expression that your dust bunnies preferred to be left undisturbed. I was trying to explain to Sam that it wasn't like I was trying to get my affairs in order, so much as my completely irrational fear of the film crew - well, that, and nosy neighbors that talk.

I don't have much of a chance to nurture dust bunnies, because I have the finches that scatter seeds like crazy. With the hardwood floors they spread amazingly fast to the far corners of the house! If someone doesn't vacuum at least every other day, we start to "crunch" when we walk around LOL (well, its not that bad, but you get my drift)

hugs to you too! I hope you've recovered fully from vacationing. :smile:

 

[rose]

I got some answers.

No more straws for me.

That's the bottom line. It was explained after my swallow study that even though using a straw will help with tongue weakness, it delivers the liquid too quickly to the back of my mouth, and so when I swallow, there is "penetration".

The speech pathologists and my laryngologist have both said previously that I have mis-coordination when I swallow (among other things, LOL) so the combination of this, along with weakness, is what what is allowing my beverages to get where they don't belong.

They did not think I was into dangerous territory yet. When I sipped the barium out of the little cup, it wasn't bad at all, but when they had me use a straw, it immediately was a problem ~ the guy watching the monitor does a voice recording of what is being observed during the test, and he kept saying, "penetration, penetration"... etc, every time I'd swallow.

They (I saw two at the same time again) were kind of divided about me having to use Thick-it. So, even though it might be helpful to have liquids thickened to a "nectar" consistency, it wasn't as needed as me just not slurping it up fast in a straw.

Bottom line is that my red wine is safe to drink "as is" for now.

- just not through a straw

The other finding was slowing in the esophagus. They seemed to think this was a big deal, and something that needs the attention of a gastroenterologist, as it is out of the realm that they work with.

I questioned if this was yet another problem with my health, or if it was cranial nerve related.

The answer ? bingo! cranial nerve #10. Named the Vagus nerve.

This nerve exerts motor control over some of the muscle fibers in the esophagus, down to a specific point, (the left something or other, which is near the spleen?) this is the section of esophagus where my problem is. The esophagus is mixed muscle fiber there; smooth and skeletal..

Amazingly, this same nerve is involved with my soft palate that is also weak, and other areas I have problems clinically observed. I don't remember all of the areas as they were just giving me so much information, could only retain so much.

I said (jokingly) to them that the vagus nerve sure gets around, and it turns out that is exactly why its named that. "Vagus" means: to wander.


If I don't have another crisis, I don't need to go back for three months. (yay!)

I hope this post was helpful to others trying to understand the way things work in our bodies. Its not like I think its interesting because its happening to me, but rather that its just interesting. ~ and I know there are others on here with similar difficulties.

take care,

 

[BethU]

Rose ... that is fascinating. If it is the vagus nerve that is causing all these problems, does this mean it is not generalized bulbar palsy? i.e., that you are home free, so to speak? Lord, I hope so!

How is the pneumonia coming along? Are your lungs clearing?

Interesting, too, about the straw. I had tried using a straw a year ago, and it shot the liquid to the back of my mouth and choked me, so I gave it up. I have to really control the quantity of liquids I take in ... like a teaspoonful at a time, and keep it in the front of my mouth (where it can immediately start to drool out).

Get well fast!

 

[rose]

Beth, no, it doesn't point away from bulbar palsy. (i know, I got excited for a moment too). The 10th cranial nerve is one of the bulbar nerves affected by this disease. I think they told me 7-12, skipping the 8th nerve. I don't really know how many nerves I have screwed up, but for sure the 7th, 10th, & 12th....

This is something we talked about with Ms Clawson at Hopkins. I'd asked about the emotional lability, and why it was involved with a motor neuron disease. She explained it as ALS being a disease of the motor neurons, but it wasn't necessarily only motor neurons that were affected

In my case, she said that my dry eye/ mouth could even be attributed to the 7th cranial nerve, as that nerve does other things than just motor function. She also said it was responsible for my weak eye closure (remember us talking about eyes not being involved? Well, maybe not eyes, but the 7th does part of the eye closure.

Still, I continue to not follow a typical path, but it never seems to be something that points away from ALS and toward something else. I guess I have some "extras" just like you do. Only, it seems I get the correct nerve involvement, just more aspects of the nerve function get thrown in for fun and games.

Its so weird, I have no reflux that I'm aware of, never any heart burn. I "googled" the vagus nerve after I posted this, and guess what, it is involved with breathing, heart rate, and blood pressure too.

Thanks for the well wishes, I'm much better.

 

[L4dybugg]

This is all very interesting Rose, I feel like I'm in class. lol. Trying to take it all in. There is so much to learn.

Take care

Hugs Lori