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
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