JamieL
Active member
- Joined
- Feb 19, 2013
- Messages
- 51
- Reason
- Loved one DX
- Diagnosis
- 02/2013
- Country
- US
- State
- Texas
- City
- Dallas
I think when it comes to supplements (or even rx drugs), in ALS especially, the phrase "correlation does not imply causation" always seems to pop into my mind. The phrase is used in science and statistics to emphasize that a correlation between two variables does not necessarily imply that one causes the other.
Just my own opinion here, but to me it seems that if you've met one person with ALS, then you've met one person with ALS. There is a bank of symptoms they MAY develop... or not. And for some those symptoms will be worse than in others. It doesn't happen in the same order or at the same rate for any two people. There is no firm link (unless you have FALS) as to why these folks develop ALS to begin with. So it makes it very difficult to know what, if anything, works. Especially since the focus seems to be on "slowing the disease" rather than reversing or curing it.
My mom showed her first eyebrow raising symptom in 2006 when she was taking her supplements with apple sauce rather than water and mentioned that for some reason she choked easily when swallowing liquids. Then she slowly lost weight. Her speech very gradually started changing. Then about 18 months ago, people started to notice and ask what was wrong. After a full out "balls to the walls" effort on our part to get her diagnosed beginning last August, we finally got an ALS diagnosis in February 2013. She is almost all bulbar. But she speaks, eats, no PEG, walks (no cane), and generally can still care for herself. So if she did ANYTHING, be it Rilu tek, supplements, DP, or whatever, who could really say if it "worked" or not? Maybe it would slow the progression. Maybe not. But if she lived another 5 years would we swear by the DP or whatever it is she is taking? Or would we say yeah, she is a slow progresser and would have been regardless? She is on Rilu. now simply because she qualified for a drug assistance program. If she lives another 3 months or another 13 years, I'm not sure I'd give it any credit or blame. But if it does any good, it's worth it. She's bulbar so we'd not subject her to DP. But if it manageable for you and you want to try it, then like all things in ALS, I say go for it. We're kind of in the "nothing to lose" camp anyway, right?
Just my own opinion here, but to me it seems that if you've met one person with ALS, then you've met one person with ALS. There is a bank of symptoms they MAY develop... or not. And for some those symptoms will be worse than in others. It doesn't happen in the same order or at the same rate for any two people. There is no firm link (unless you have FALS) as to why these folks develop ALS to begin with. So it makes it very difficult to know what, if anything, works. Especially since the focus seems to be on "slowing the disease" rather than reversing or curing it.
My mom showed her first eyebrow raising symptom in 2006 when she was taking her supplements with apple sauce rather than water and mentioned that for some reason she choked easily when swallowing liquids. Then she slowly lost weight. Her speech very gradually started changing. Then about 18 months ago, people started to notice and ask what was wrong. After a full out "balls to the walls" effort on our part to get her diagnosed beginning last August, we finally got an ALS diagnosis in February 2013. She is almost all bulbar. But she speaks, eats, no PEG, walks (no cane), and generally can still care for herself. So if she did ANYTHING, be it Rilu tek, supplements, DP, or whatever, who could really say if it "worked" or not? Maybe it would slow the progression. Maybe not. But if she lived another 5 years would we swear by the DP or whatever it is she is taking? Or would we say yeah, she is a slow progresser and would have been regardless? She is on Rilu. now simply because she qualified for a drug assistance program. If she lives another 3 months or another 13 years, I'm not sure I'd give it any credit or blame. But if it does any good, it's worth it. She's bulbar so we'd not subject her to DP. But if it manageable for you and you want to try it, then like all things in ALS, I say go for it. We're kind of in the "nothing to lose" camp anyway, right?