BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
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!"
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!"
