Lunasin results/reviews/issues

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Becky, What kind of fiber powder does Matt use? I am doing great with psyllium but if swallowing becomes more difficult I'll have to go with benefiber or something that dissolves and doesn't clump.
Sorry to hijack.
 
Kim, it's psyllium fiber.
 
I love that stuff. I think I've been on it about 5 months and have never had constipation or diarrhea since starting it. Before that I'd have to take fleet enemas and take magnesium just to go. Prior to Remeron, I had NO trouble ever.
 
https://youtu.be/6fAnSWzGRSw

This is the most exciting video of Matt's progression so far, because it shows him lifting his thigh a bit off the bed. These legs had no movement at all--no muscle flexing and no more fasciculations before starting Lunasin. Ignore the narration, I'm so excited that I can't tell his left from his right.

This is at just under six months.

Becky
 
That is so great, Becky.

Just this week I noticed that I am able to move my left hand again, it has been pretty much dead for months and months. I was so excited that I keep moving it around, but also am afraid to wear it out. Let's just hope that whatever is going on continues!
 
Kay, that's wonderful!!

I keep telling Matt to not wear himself out. Now I've learned that he lays in bed at night pushing against the footboard....no wonder he's not sleeping!

My fingers are crossed! I'd love to see a reversal in his arms and trunk muscles.
 
I've got everything crossed for Kay and Matt! Love these updates!!
 
3 month update

I went to my clinic last week, And last saw doc just before starting Lunasin.

Blood work was perfect.
FVC down from 68% to 62%

A few areas like my left wrist and middle finger moving again. Also more movement in right hand. She was impressed with recent pool video that showed increase in core strength.

My ALSfrs is the same as three months ago, 22. This is the first time it has not declined and the three months between appointments.

I do seem a little weaker in the legs, but still able to do stand and pivot transfer with assistance.

Conclusion, will give it three more months and see what happens.
 
Kay, what an encouraging report. I've got everything crossed for you too!
 
Kay it's certainly doing something, I wish it was doing more for your FVC.
Let's hope the first 3 months was just a warm up and the next three become a turn around of some kind.

Nuts, how is Matt doing? Are you doing weekly video? Kay are you doing regular video too?
 
Oh my gosh! Just now reading this, haven't been here much. Is the Lunasin something we can get anywhere or is there a special mix we need to get. Please please advise
 
Shawnlee, Lunasin is sold through distributors (it's an MLM company) and you can also buy it on Amazon. It's expensive and works on a small percentage of PALS.
 
Becky are you still doing video every week? How is Matt doing now? Don't mean to bug you but I so often think of the amazing video we have seen :)
 
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