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    #31
    Pertaining to those looking at applying, don't hesitate over what "grasp" you do or do not have. My husband does not have any hand/finger function at all. He uses his wrist tenodisis to pick small things up. He has tricep use in just his left arm. He met the very minimum standards to be included in the trial. Before we took the 8 hour drive to Chicago for the initial visit we did a video conference to see if it was worth the drive. Every other visit or so they do ASIA scoring and GRASSP testing.

    I asked our physiatrist again if I could talk about the trial and he told me he was not aware of that being an issue. So, I'm not sure why I can't give detail. If Jim would give me the green light, I'd share more. I'd tell you all to go to my social postings, but my husband doesn't really want it out there for all our friends and extended family to ask all the time. As all of you know, the pressure you give yourself to get better and make improvements is overwhelming enough besides being asked all the time.
    Last edited by Jim; 8 Jun 2021, 7:55 PM. Reason: Removed trial details

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      #32
      Originally posted by lunasicc42 View Post

      Jim, if NebrFarmer wasn't made to sign a nondisclosure isn't that like a greenlight to share information and her experience?
      No greenlight luna, it compromises the trial.

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        #33
        Originally posted by NebrFarmer View Post
        Pertaining to those looking at applying, don't hesitate over what "grasp" you do or do not have. My husband does not have any hand/finger function at all. He uses his wrist tenodisis to pick small things up. He has tricep use in just his left arm. He met the very minimum standards to be included in the trial. Before we took the 8 hour drive to Chicago for the initial visit we did a video conference to see if it was worth the drive. Every other visit or so they do ASIA scoring and GRASSP testing.

        I asked our physiatrist again if I could talk about the trial and he told me he was not aware of that being an issue. So, I'm not sure why I can't give detail. If Jim would give me the green light, I'd share more. I'd tell you all to go to my social postings, but my husband doesn't really want it out there for all our friends and extended family to ask all the time. As all of you know, the pressure you give yourself to get better and make improvements is overwhelming enough besides being asked all the time.
        I removed the 1st paragraph of your post because that info should not be shared publicly.

        The person you should ask about sharing information is the ReNetX contact listed on clinical trials.gov- Gilbert Block, Chief Medical Officer, MD, PhD 1-203-208-8925 info@renetx.com

        Sorry, can't let you share the information here.

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          #34
          Originally posted by Mitchitsu View Post

          Yeah, honestly I think they are confused themselves about what they're looking for. At least they were last year.

          You have to have some dexterity in your hands and arms. But not too much

          My left hand has pretty good dexterity although extremely weak. My right hand has very little dexterity and I cannot make a complete fist. Yet somehow I'm not qualified because I have too much movement...

          ​​​​​​While at the same time they admitted to me they were having a difficult time finding subjects. Well obviously
          I agree, it has been a little confusing from the start. I believe they started with chronic injuries but not chronic injuries older than 10 years and they had to give up on that. 🤔
          please . . .test what you already know; and give us what you have. we may not be dying, but we certainly are not living either

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