A few weeks ago, we received information that the results of the Nilotinib study were published in The Journal of Parkinson's Disease. You can go to their website.  It's in the current issue. I picked myself out of the list of participants (#11) and began to look at the results.  The next time I see Dr. Pagan (in August), I intend to get a more detailed and understandable report. In the meantime, I will get Dr. Drew Falconer, our second neurologist to share his opinions about the results and mine, in particular. Dr. Pagan will be beginning another trial with PD patients, I think, in the fall. Also, there will be trials for ALS and Alsheimer's Disease at Georgetown.  We also checked out the Michael J. Fox Foundation and found that they will also begin a trial with Parkinson's patients.  This is highly encouraging.  While the neuroscientists in association with the MJFF were critical of the "hype" they believe came from such a little study with so few participants and no double blind "scientific" components, they still believe it's worth researching.  Only people who have a degenerative, debilitating disease understand the need for HOPE.  That's why I and a number of others are taking Nilotinib and paying a lot of money for it.

By the way, our second neurologist, Dr. Falconer, has recommended that I consider getting Deep Brain Stimulation on the second side. He says that since I'm only being stimulated on one side, the second side would be advantageous.  DBS made a big difference for me when I had the first side done in 2008, so I'm thinking about it.  Eighty to ninety percent of people having DBS note improvement in their symptoms.  The researchers say that about 30% of patients with Parkinson's Disease are good candidates for DBS.

We received a call from the communications person at Georgetown last week.  She said that CBS Evening News was interested in talking with us a year after the trial.  When we know more particulars, we'll share it.