Introduction to a little hope

Introduction to a little hope

   

I began a blog following Deep Brain Stimulation Surgery in 2008, hoping to inform possible candidates about what “it was really like.”  For additional information, go to http://www.pacemakerforthebrain.blogspot.com. After adding a year later follow-up, I thought my blogging days were over.

    Why am I starting again?  I was involved in a clinical trial at Georgetown University Hospital in 2015 dealing with Nilotinib (Tasigna), a medication already in use for patients with Leukemia.  It was categorized as a safety trial to see if Parkinson’s patients could tolerate it in much smaller doses. 

Dr. Charbel Moussa and Dr. Fernando Pagan hypothesized that substances in Tasigna could reduce the amounts of substances in the bloodstream and spinal fluid that cause plaque in the brain and thus cause cell death.  The results of the small (11 people) trial were substantial.  The quality of life issues that all people with degenerative illnesses face were improved for all 11.  Patients began to walk, talk, think better than they had for a long time.  The research was presented at a Neuroscience Conference in Chicago in October of 2015 and immediately attracted international attention.  Nancy and I had been interviewed by several news groups in October and soon began to receive phone calls from Parkinson’s patients and/or their caregivers from all over the United States and Canada.

This has continued with return calls from the original 12 or so people we have corresponded with via email and phone and we continue to get calls from ‘new’ people who have just found out about the clinical trial.
                       
    So… I thought it might be time to blog again to tell my story (including some of the original blog), but adding the years since my DBS story.  I have asked two additional people to respond/react/expand the Parkinson’s story.  One is a neurologist, new into his own practice, who was a fellow at Georgetown University during the time of the trial.  The other is one of the first people who called us following the conference in Chicago.  He is an attorney who has a food fraud business and lives in New York and his Father, who has Parkinson’s Disease, lives in Ottowa, Canada.  As a child of a parent with Parkinson’s, he brings a different perspective to the story.

It is my sincere hope that this information will be helpful to every reader.  We all need HOPE.

Sincerely,

Alan Hoffman