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Sometimes I get a little bound up but I usually work it out. (Never thought I would discuss this on a forum)

LOL, there's no such thing as TMI here. You should read some of the stuff that gets discussed here... :)
 
My former care-giver who is now in nursing training warned me in advance that I would have possible bowel problems with this regimen. I will have to check with her for the reason why.
 
I found out from my former caregiver that a high protein diet can easily bind us up because protein is replacing fiber. If there is a problem she suggested boosting the amount of fiber with some metamucil.
 
My ex-caregiver says you can get bound up with the Lunasin if the amount of protein in your diet exceeds the amount of fiber. We should add Metamucil to our diet to remedy this.
 
i am only 5 days into it but don't have constipation (yet). thinking possitive oh yea! hey bob we'er in this together, we'll try to show you something if there is something to show,however what might you be bringing to the table? love ya chally
 
Hi there!
We started on Lunasin about the same time. I'd like to keep in touch with you for encouragement for each and to compare notes. I'm noticing more cooperation in my muscles trying to form words. I'm also able to engage muscles in my stomach area too. Encouraging! Are you enrolled on Patients Like Me? How about Facebook?
 
I think each person should create their own thread and post regular updates on any trial into it.

Document everything - take photos and/or video every week repeating whatever task you are trying to measure. Document how much you are taking accurately.

Then there is valuable information for yourself, your doctors as you can easily show them and others who may consider trying the same.
 
I'd suggest using Patients Like Me for tracking.
 
Nana Suzy - don't know when you started so not sure who you are referring to as `starting about the same time as you` but I just wanted to note that since you were diagnosed in 2010 you might have a somewhat slower progression than most so you will possibly see earlier results than most. I would think that we will all see different results than each other according to our rate of progression of symptoms. Of course encouraging each other is really a great idea!
Also, what do you mean by more cooperation in your muscles trying to form words? I don't understand. Good luck to you!
 
My theory is that the slower the progression the slower the motor neurons are being destroyed and therefore the lunasin's rebuild rate would catch up to the regression rate.
 
Good idea Greg I haven't checked that site but I hear it's great.

Still it would be good to see it being tracked here in a way people can follow - occasional posts by many people in a single thread don't give me much idea of what is being achieved. But then I'm an information management kind of gal I guess ;)
 
Hi Greg,
Yes, my progression has been very slow. I started on Lunasin on September 19th. Just thought we could compare notes while following Duke Protocol. I have been enrolled on Patients Like Me since 2010 and prefer that site due to it's ease in navigation. Duke will also be using that site for all participants to report their results once the official clinical trial begins.
 
Yes, I'm on that site too.
 
Just spent a couple hours getting set up on patients like me. Exhausting work with a Tobii, but it is a pretty cool site.
 
Just got back from Spirometry test.... Pretty awesome news. I have improved in both FEV and FVC. On august 28 my fev was 2.36 and today it was 2.69. My fvc was 2.54 and today it was 3.03. I also gained 3 pounds, from 181 to 184. In two months I have my clinic visit and I am going to do another spiro.
 
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