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BethU

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Hi, all ... I probably shouldn't be writing about any change in symptoms, or new ones, as so many odd things come and linger for a few days, weeks, or months then disappear.

BUT ... I started in the emotional lability clinical trial last Wednesday ... I was keeping a diary before I started, and was having one to three weepy episodes a day before the trial started ... and I have had no weepiness since. So that is very good. The meds have also given me much more energy and focus, which I was not expecting ... my mind had been foggy for quite a while, but now I've been able to resume some projects that I'd put aside for a couple months because I just didn't have the energy.

I believe this particular trial is not using placebos, they are putting patients on different dosages to see what works best. But if this is a placebo, I'm going to stay on it!

But here's the wild thing. MY SWALLOWING has improved! The "difficulty initiating swallowing," which drives me nuts, is gone. When I took my first regular pill in the evening of the day I started the trial, I put the pill in my mouth, sipped some Coke, and swallowed the pill immediately. I was like, "Wait, what just happened here?" It seems that automatic swallowing took over, just like normal people do.

Usually, it takes 30 to 60 seconds for me to get my throat muscles working with a pill or thick liquid. (Solids are OK, for some reason) And when I do manage to swallow a pill or thick liquid, it feels like I squeezing them through a narrow passage. Now, my throat feels "open." I just pop a pill in my mouth, sip something, and it goes down automatically, without my thinking about it. :shock:

My speech has also improved, but that is because of the extra energy, I think: I am able to separate out syllables again, and speak more forcefully, so the mushy, slurred syllables can be understood. They're still mushy and slurred, but easier for others to understand. I had been so exhausted that my speech all ran together, and sometimes my voice would go to a whisper and disappear in the middle of a sentence. So that is great.

But it is the swallowing that has knocked me for a loop! I NEVER thought any symptom with ALS could get better. I've only been on this trial med for 6 days, and I know that by tomorrow, everything could be back to where it was a week ago, so I keep telling myself "Enjoy this! It may not last long!"

Something that has occurred to me as possibly connected to all this is that, two months after the symptoms started in 2006, my PCP doubled my Lipitor from 40 to 80mg.

Since joining this forum in May and reading threads about statins, I started cutting my pills in half, and then in quarters. But most of the time I couldn't swallow them, so just spat them out when I couldn't get them down after a minute or two.

Now, for the last two weeks, after learning about the Canadian study, I have cut them out completely (with my cardiologist's OK, although I would have cut them out without his OK, if he'd said no :)), and I wonder if that could be connected to my improved swallowing. If statins make symptoms worse ... then perhaps quitting statins may make symptoms better.

Anyway, this has been a delightful surprise. It feels like the greatest luxury in the world to put a pill my mouth and just ... swallow it!

BethU
"You don't know what you've got till it's gone!"
 

crystalkk

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Beth,

That's great, I hope that it continues to stay that way for you.

Do you know what you are taking or do they keep it a secret?
 

CindyM

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Interesting, Beth. Let's hope it continues!
 

BethU

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Crystal, I've heard the name, but can't remember it, naturally ... but it contains dextromethorphan and quinidine. They are trying doses of 20 or 30 mg of dextromethorphan, both with 10 mg of quinidine. Looking at the package, it appears they are including placebos.

BethU
 

sdsyd

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Well, that my dear is something to CELEBRATE!
 

ncdaddysgirl

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Zenvia

The name of the drug you are referring to is ZENVIA. Here is the government link about the research study if you are interested. My father will hopefully be able to take part in this study as well, that is if they dont find him to be depressed (which he & I think that he is not, others disagree). We were told ALS patients that are suffering from depression cannot take part in this study.
 

kelly

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keep us posted

Beth..please keep us posted. Hold on to hope! KR
 

ncdaddysgirl

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Oops

I am assuming the link I was referring to has to be approved before posting? Sorry
 

BethU

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Thanks for the information on the drug. I hope your dad can get in the study, as it seems to be a valuable med. I was told at first that I couldn't qualify, because I have heart disease, but the neuro consulted with my cardiologist, and they got me in. So they seem to be eager to enroll everybody they can.

The depression your dad is feeling is very natural, and may be connected to the "emotional lability" aspect of ALS ... where emotions are exaggerated or inappropriate. But it is, of course, also a VERY normal response to the diagnosed!

Take care,
BethU
 

brendapals

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Beth,
Congrats on the improvement! Here's hoping it continues for many, many years to come! My husband told me tonight he thought my speech was actually better over the last 2 days, and today 2 of my patients told me it was better than 6 wks ago when they saw me. Don't know...
Keep the faith,
brenda
 

BethU

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That's great, Brenda ! Especially if you're getting unsolicited feedback from others about your speech, it must be real. I don't understand how ALS works, but it seems maybe it can "plateau" ? And just maybe there can be small improvements ...

I know the long term is going to be downhill, but it feels great to win a small battle here and there!

Stay strong!
BethU
 

brendapals

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Beth,

Thanks so much, and I'm so tickled for you! I'm like you, I don't know exactly how ALS will work for any of us, but, as for me, I'm still praying for a miracle for all of us!
Keep up the great work!
brenda
 

awieleba

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HI beth,

I am happy for you and it can be these little things that make us happy!

Keep swallowing....and enjoy it as long as you can
 

happy

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Beth and Brenda, I am happy for you both...hoping for you both that everyday there is improvement that stays.
 
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