Add text
ALS WINNERS - THE ROAD TO RECOVERY
  • Home
  • Our program
  • Check List
  • Foods
    • Supplements
    • Resources
  • Ozone/EWOT
  • Kim's Chapter
    • Then & Now
    • Special Report
  • Misc
  • Other's success
  • Contact us
  • Link to all updates & index
    • 2021 Updates >
      • Jan 2021
    • 2020 updates >
      • Jan 2020
      • Feb 2020
      • Mar 2020
      • Apr 2020
      • May 2020
      • June 2020
      • July 2020
      • August 2020
      • Sep 2020
      • Oct 2020
      • Nov 2020
      • Dec 2020
    • 2019 updates >
      • Jan 2019
      • Feb 2019
      • Mar 2019
      • Apr 2019
      • May 2019
      • June 2019
      • July 2019
      • Aug 2019
      • Sep 2019
      • Oct 2019
      • Nov 2019
      • Dec 2019
    • 2018 Updates >
      • Jan 2018
      • Feb 2018
      • Mar 2018
      • Apr 2018
      • May 2018
      • June 2018
      • July 2018
      • Aug 2018
      • Sep 2018
      • Oct 2018
      • Nov 2018
      • Dec 2018
    • 2017 Updates >
      • Jan 2017
      • Feb 2017
      • Mar 2017
      • Apr 2017
      • May 2017
      • June 2017
      • July 2017
      • Aug 2017
      • Sep 2017
      • Oct 2017
      • Nov 2017
      • Dec 2017
    • 2016 Updates >
      • Jan 2016
      • Feb 2016
      • Mar 2016
      • Apr 2016
      • May 2016
      • June 2016
      • July 2016
      • Aug 2016
      • Sep 2016
      • Oct 2016
      • Nov 2016
      • Dec 2016
    • 2015 updates >
      • Jan 2015
      • Feb 2015
      • Mar 2015
      • Apr 2015
      • May 2015
      • June 2015
      • July 2015
      • Aug 2015
      • Sep 2015
      • Oct 2015
      • Nov 2015
      • Dec 2015
    • 2014 updates >
      • Jan 2014
      • Feb 2014
      • Mar 2014
      • Apr 2014
      • May 2014
      • June 2014
      • July 2014
      • Aug 2014
      • Sep 2014
      • Oct 2014
      • Nov 2014
      • Dec 2014
SPECIAL REPORT
By Kim Cherry
 
We first heard of Dr. Richard Bedlack, the head of the ALS division at Duke University in April of 2015 from other PALS.  Dr. Bedlack has been collecting records and documenting PALS who have seemed to reverse ALS.  Their definition of an ALS Reversal is any PALS that has a confirmed diagnosis of ALS that has been able to not only stop the progression of the disease, but to also have been able to show measurable improvement for over a period of at least one year.
 
I called Dr. Bedlack in January of 2016.  We spoke on the phone for about an hour, and he asked that I send him my medical records.  I sent copies of my two sets of EMGs and NCSs, that were done in November of 2011, and again in September of 2013.
 
After receiving the records, Dr. Bedlack got back to me almost immediately, and stated in an email that the EMGs were very convincing of wide spread Motor Neuron Disease.  He asked if I would send copies of the ALSFRS-R (The ALS Functional Rating Scale that measures muscle function at specific times during the ALS progression).  I sent an ALSFRS forms from January of 2012, my worst, and from my present condition.  The two test showed very significant improvements. Thus, I have been confirmed by Dr. Bedlack has being an ALS Reversal.  DR. Bedlack asked if I would be willing to be a part of a study of ALS Reversals that Duke was attempting to get funding to complete.
 
I received another email from Dr. Bedlack last May 5th, stating that the Wall Street Journal was doing an article on his work on ALS Reversals, and asked if I would be willing to be interviewed.  On May 10th, I had a 45 minute Facetime interview with Amy Marcus of WSJ.  Below is a link to the article that came out in the online publication of the Wall Street Journal on Monday, June 13, and a day later in the printed version.  The photo in the article was taken the same day as my interview during an 18 hole round of golf.
 
http://www.wsj.com/articles/the-mystery-of-als-patients-who-see-improvement-1465845332
 
It is nice to be mentioned in the article, and to bring recognition to the fact that people can and do beat ALS. Though the article mentions that Dr. Bedlack has only confirmed 23 such reversals in 16 years of practice, it is not the whole picture.  We are aware of many more, and I am sure there are countless others simply going on with their lives without being in the lime light.
 
The exciting thing about this whole experience is that Dr. Bedlack and many other high level ALS specialists have started looking at those of us who have supposedly done the impossible, and they are asking "How and Why?"  They hope to find answers and to replicate the reversals in many more PALS.  Dr. Bedlack hopes in the next few months to   start a controlled study on the protocol that we believe has produced my success.

If the above link no longer works, try this link:

http://www.alscenter.org/news-and-media/news/the-mystery-of-als-patients-who-see-improvement

 

Proudly powered by Weebly