Improved symptom

[BethU]

I just made that up about "seated" ... couldn't figure out how to say that I understand they are all controlled in the same general area of the brain.

The aspirations and choking were very pronounced during the first week of the trial, but have gone away now. It seems to be a question of good days/weeks and bad ones.

My next clinic visit (as opposed to the research visit next week) is in December. I have gained 10 pounds since June (groan ... I had wanted to gain 5, but can't stop gaining now! I'm trying to diet by going back to real food instead of my magic milkshakes, but I have a real craving for the milkshakes) so I don't know if that will determine the peg or not. They mentioned the peg at my first appointment, and I told them that was fine with me. They didn't mention it at the second appt.

We'll see. They're thrilled that I'm gaining weight. The thrill went away for me about five pounds ago. :-(

BethU
PS -- I'm sure you captured the exact degree of perkiness of the girls.

 

[patricia1]

Hi, Rose ... I haven't noticed any change with my "lively" gag reflex, but there is something different happening with my mouth. VERY slight, but noticeable. For instance, I now have a little more lip seal. Before I would have to clamp a towel over my mouth instantly, as soon as I put a liquid in. Now I can process a sip of liquid without the towel.

I can also eat non-challenging solids (toast) without the towel, but I could before, too.

The swallowing of pills is still slightly better. Sometimes, I can swallow one without even feeling it or realizing it. I do have the delay in initiating the swallow again, but it is much shorter ... 5 to 10 seconds, as opposed to a minute. And my speech has more force. I practiced a little with my big problem ... initial G, as in "you go girl," and I can kinda sorta almost say it.

If I concentrate on swallowing, it slows it down. Also, I find I tense up (my shoulders up around my ears!) when I'm trying to get the swallow going, so I try to consciously relax. When I absolutely, positively can't get a swallow going, if I turn my head to look over my shoulder, left or right, it will get the muscles working.

About the emotional lability: I haven't had any problems laughing either, but my big problem was agitation, anger and frustration ... these would usually lead to a tantrum and/or crying. I was getting so agitated, I had to take valium, which I hadn't taken for 30 years. I think I took it four times in the two weeks before the trial started, but haven't needed it since. I am in control again, and feel "normal" mentally. Also have that extra amount of energy that makes all the difference.

Trying to get the trial pills out of the stupid bubble wrap this morning, I accidently poked a hole in one capsule, and the contents spilled out. It's definitely not a sugar pill! Yuk!

BethU
P.S. next appointment is next Wednesday.

hI bETH
i WAS WONDERING iS YOUR dOCTOR SURPRISED AT THE IMPROVEMENT IN YOR SPEECH AND YOUR LIPS.IS IT SOMETHING OTHERS ARE GETTING OUT OF THE DRUG.

tHANKS pAT

 

[BethU]

Hi, Pat ... Haven't seen the doctor since I started the pills. I go Wednesday.

I don't know if the doctor will detect a difference. He told me before that he could understand me. But my husband couldn't, and now he can. My speech is not any clearer, but I can put energy into it, and there's a change in voice quality. My voice had become very high-pitched, nasal, whiny and quavery. This may be why Paul can understand me now ... he has some hearing loss in the higher registers, and now that my voice is lower again and louder, he is able to figure out what I'm saying.

The swallowing still has some improvement, but not as much as the first week. I'm starting to have a longer delay again, but am still able to get pills down more easily.

I'm going to write this all out for the neuro on Wednesday and get his feedback. I'll let you know what he says.

The big improvements are the emotional control and the increased energy overall.

BethU

 

[BethU]

lability med clinical trial

Hi, Pat ... went to UCLA this morning, and was reporting the improvement in my swallowing (although it is almost back to where it was before the meds ... but, still, a little improvement) ... and the research woman said, "And your speech has improved.."

It was actually my impression that my speech had deteriorated again, but I am not good at guessing how I sound to others ... so I was really surprised that she could hear a difference without my mentioning it.

This med is on the market, although it's not yet "permitted" for ALS; what this stage of the trial at UCLA is doing is comparing dosages.

She said it's a combination of two meds: one is a tranquilizer, and the other works on the bulbar area in some way. She said it affects the entire bulbar area, not just the emotions, so the swallowing and speech improvements are to be expected.

So ... here are the changes I have noticed after two weeks.

-Mild improvement in energy and mental focus
-Minor improvement in swallowing pills
-Minor improvement in speech due to increased energy. Slurring has not changed, but my voice quality has improved a LOT, I think. It's less nasal, I can put more expression into it, and it's a more pleasant range (not high and whiny like before).
-A slight improvement in lip seal!
-Remarkable improvement in emotional lability. No outbursts in last two weeks. (Before this med, it was 1 to 3 a day.)

Side effects: First week (when my swallowing was great) I had a lot of choking and aspirations. Those have gone away. I have not had any other problems.

BethU

 

[BethU]

Rose: Ref gag reflex

Hi, Rose ... how was the camping trip? And how did your Mini hold up?

I can't remember the thread where we were talking about gag reflexes, so I'll post to this thread. I hadn't thought about my "lively" reflex for a while till you mentioned it recently, so I tested it, with the finger down the throat ... and I have no gag reflex at all, now! It's gone!

And suddenly I made the connection to my most embarrasing swallowing problem ... the "projectile vomit" of the food in my mouth. It was not vomit, of course, but simply whatever I had just put in my mouth came instantly spewing out.

I'd take a sip of Diet Coke, and S*P*L*A*T, the Coke was spewed all over the computer screen and keyboard. Or taking a bite of meat loaf at dinner, start chewing, and S*P*L*A*T, half-eaten food was spewed all over the table. It was unpredictable, but continued for a long time .... maybe 6 months to a year? Most of the time I could swallow OK, but several times a week, I'd get that effect. That MUST have been "projectile gagging."

This is when I started putting a towel over my mouth the second I put food or liquid in it. At the dentist's, when he stuck the mirror in my mouth, I "convulsed" -- feet up off the chair, big jump. I really had violent reactions to the gagging.

So (for now) the gag reflex is gone. And I have not had that "projectile gagging" for a couple of months. (Thank God. That was a stinker of a symptom. And I HATE cleaning the keyboard all the time.)

Anyway, this is just FYI.

I put some photos on my home page showing "before and after" as my smile has quietly disappeared to be replaced by the lip droop.

Welcome back!

BethU

 

[rose]

Beth, that is very interesting (the gag line LOL)

I looked at your photos, and yeah, I know what you mean about disbelief at what we're willing to post, where is our vanity when we need it! just kidding. I think you look every bit as attractive now as before your mouth side went kaput on you. Inner beauty shines out, and a little muscle weakness isn't going to stop it!

I know my right side of my face is more immobile than the left, but its still more the doctors that notice the asymmetry than me. (Of course smiling makes it easier to notice).

I did not ask about the gag reflex during my visit. I did ask about the emotional lability, as Ms Clawson had said I could take part in the trial of the meds you're on. From what she said, I think that most people either get the crying or the laughing; not so much both. And I think I'm glad I cry rather than inappropriate laughing, socially that has to be a little easier. She didn't really say that they think the emotional lability occurs because of it being a reflex, but just that even though motor neuron disease affects motor neurons, it doesn't strictly limit itself to affecting motor neurons. I get the impression that the UMN involvement is not as well understood as the more clear cut LMN with this stuff.

I see my neuro down there on Monday, so maybe I'll learn more then. My oldest son is going with me. He works as a software engineer, but could have made a great research scientist if he'd wanted. (Growing up he was always explaining concepts to the other kids and asking amazing questions that I'd have no clue as to how to answer). He said last night that he hates to admit it, and for me to not take it wrong as of course he'd never wish this on me or anyone, but that the whole idea of MND and what causes it is fascinating. Anyway, he'll be along for the appointment, and no telling what he's going to come up with as questions to my neurologist.

About our trip; we had a fabulous time camping! I've changed my avatar picture temporarily to a photo of me on the Shenandoah. The Mini was packed to the gills, but everything fit. It was too chilly to ride with the top down much, but it was a hoot driving in the mountains as it handles curves really well. I added a little post script about the trip on my post about the clinic visit.

Back to the gag... I wonder when it changed for you? It must have already waned before you started on the trial medication. I'm really glad that this stuff is helping you, its encouraging that they're coming up with ways to help.

One of the studies I was invited to join was one questioning whether ALS could include forms of thinking difficulties. I don't know if they were specifically referring to FTD or not. A neurologist had come in to talk to us about it a little. It will involve both me being interviewed, as well as Don from a caretaker's perspective. We just ran out of time, or we'd have done the initial interview while there. The whole time the doctor was explaining about the study, I kept thinking how I wished you were there in the room too!

 

[BethU]

Rose, so glad your son will be going with you. An outsider will be able to look at all this with fresh eyes .... and he's right. It is fascinating!

FTD: Last week I had a bout of euphoria again ... hadn't had one for 4-5 months. It was different with the lability meds ... the nirvana quotient was not as intense ... but the "perception" was the same. It's hard to describe: It first happened in December in ICU, where the patterns of walls meeting the ceiling were achingly beautiful, and I felt like I was actually inside a Mondrian painting. It's really indescribable, so "euphoria" will have to do. I spent 15 years in yoga trying to achieve this! Who knew that all I needed was ALS.

The fact that this happened again while I'm taking the lability med indicates that it is not a bulbar issue. If it's part of dementia, it's from the front-temporal region. Apparently part of the emotional reaction to it was bulbar ... not the experience/perception itself.

Euphoria is one of the signs of FTD, along with language (word search and word recognition) issues and bad behavior. So who knows what's happening. I'll wait and see if these get more frequent or more intense. Meanwhile, LOVE the euphoria!

BethU

 

[patricia1]

Hi, Pat ... went to UCLA this morning, and was reporting the improvement in my swallowing (although it is almost back to where it was before the meds ... but, still, a little improvement) ... and the research woman said, "And your speech has improved.."

It was actually my impression that my speech had deteriorated again, but I am not good at guessing how I sound to others ... so I was really surprised that she could hear a difference without my mentioning it.

This med is on the market, although it's not yet "permitted" for ALS; what this stage of the trial at UCLA is doing is comparing dosages.

She said it's a combination of two meds: one is a tranquilizer, and the other works on the bulbar area in some way. She said it affects the entire bulbar area, not just the emotions, so the swallowing and speech improvements are to be expected.

So ... here are the changes I have noticed after two weeks.

-Mild improvement in energy and mental focus
-Minor improvement in swallowing pills
-Minor improvement in speech due to increased energy. Slurring has not changed, but my voice quality has improved a LOT, I think. It's less nasal, I can put more expression into it, and it's a more pleasant range (not high and whiny like before).
-A slight improvement in lip seal!
-Remarkable improvement in emotional lability. No outbursts in last two weeks. (Before this med, it was 1 to 3 a day.)

Side effects: First week (when my swallowing was great) I had a lot of choking and aspirations. Those have gone away. I have not had any other problems.

BethU

Thats wonderful news I wish I knew what you are on.
Do they haVE ANY SIDE EFFECTS?
I HAVE THE SAME PROBLEMS WITH SPEECH ENERGY AND SWALLOWING

pAT

 

[BethU]

Pat ... the pill is called "ZENVIA."

It is available by prescription, but I don't know what dosage I'm on. The first week, I was taking one pill, and since then, 2 pills a day.

It's certainly worth a try ... ANY improvement helps!

The only real side effects were in the first week, with aspirations and choking.

BethU

 

[brendapals]

Hello ladies,
Beth- I wonder if Zenvia is available to purchase with a prescription if my doctor will write it? I'm going to call my pharmacy in the morning and see if they even have it.

In my opinion, my speech is much, much more slurred in the last week. I'm trying to blame it on having 3 days off last week, spending all day thursday with my 7 yr old at field day, spending friday picking up donations for the ALS walk, then with my sil from the east coast, then going to my 15 yr old's football game, watching my 18 yr old in homecoming court at the same game, going to the ALS walk on Saturday, which was way, way marvelous, and then a family reunion on Sunday. Went back to work on Monday, to rest!, another football game monday night, work tuesday, off wednesday, class from 3-6, worked again yesterday, and spent today renting a van for vacation, which starts tomorrow, and doing laundry to get ready for vacation!

After reading all that again, I'm just worn out thinking about how I even did it! hahahaha

catch ya'll later,
brenda:lol:

 

[patricia1]

I cant find it on the internet
Pat

 

[brendapals]

Pat,
I googled just the word Zenvia and it brought up several hits, including some clinical trial site as well.
Let me know if you find it,
bren

 

[brooksea]

pat1-

Zenvia or AVP-923 treatment. It's called the STAR trial by Avanir pharmaceuticals.

pbatrial.com

hope that helps!

 

[sdsyd]

Beth you are sweet. Thanks for posting the pics- guess what? You're STILL a beautiful woman! And I kind of like your bathrobe. Glad to hear your symptoms are improving-and the meds are helping.

Love,
Cindy

 

[patricia1]

I found it
Thanks


Patricia1