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    • #17794
      Amanda
      Keymaster

      My next visit to the University of Miami is the last week of April.  I know many of you can relate to how much I look forward to all the tests since you’ve been through them.  Now they would like me to come every 4 month and do all of the testing from the EMG to the MRI etc..  Oh what fun!!

      The last time I was there Dr. B told me that all of my test come back with abnormalities but there doesn’t seem to be a fast progression.  After watching so many family members go on their own journey with ALS (now on 15  in the family) I definitely know what to expect.

      They think they have identified an elevated protein in the blood that is detectable right before someone is diagnosable.  Dr. B is keeping a close eye on that (I suspect) and that’s why my visits have gone from every 12-24 months to every 4 months.

      Although I find the two days of testing scary, and I’m filled with anxiety (Heck, that’s already started) I also know that my small contribution is helping.  I will be using mindfulness practices to get me through the testing and my anxiety over all the thoughts flooding my brain.

      Now they have a program where you can donate your brain after you are gone. This is especially helpful to research if you are a pALS.  I plan on filling out the paperwork to make that donation possible.  I was told that you have to be specific and designate (your choice body, brain, etc) to ALS research and not  just medical or scientific research.  Has anyone heard of this for ALS?  Is anyone else considering becoming a donor?

      What other ways can a person contribute to ALS research?

       

    • #17799
      Anonymous
      Inactive

      Hi,

      The VA has this program for brain studies also. I signed up and they have access to all my medical records through VA. Hopefully, it will come to some good eventually (if it gets that far).

       

      Saw this from my VA Infor email I get.
      Effect of Context-Dependent Modulation of Trunk Muscle Activity on Manual Wheelchair Propulsion
      The thought I had was wouldn’t it be nice if they could do something with electronic stimulation of the diaphragm for ALS patients? With all the success they have with implanted diodes into the body for so many applications now, one would think they could do something similar to replace the Vent.

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