Originally Posted by Betsy859

Hi Damon,
It's really good to hear from you and especially such good news. My thoughts and prayers have been with you since you first told your DBS story. Please stay in touch you give us all hope.
How is the diet going? I'm still on low carb following Dr. Perlmutter's "Grain Brain" diet.
I'll fill you in on a couple of clinical trials I'm trying to get into. I've been in touch with the administrator of the TMS trial at NYU. She told me I had to be on sinemet which I am not. She was going to ask the head MD if I could participate anyway and still hasn't heard back from him. I'm not really too hopeful about being admitted to the trial. This is a preliminary trial where the results are submitted for funding for a bigger trial. That's what I was told. I would have to take a bus up to NYU once a week for six weeks to participate. So not too sure I'll be all that upset I'd they say no but if they say yes I'll probably do the traveling. No funding is available for participants in this trial.
Trial #2 is at Georgetown University Hospital. I'm seen there by a movement disorder specialist and have been hearing about this trial for over a year. They are very excited about this trial. It's using a drug called Nilotinib which is used to treat leukemia. It has been tested on animals and now PWP to decrease and clear the brain of the damaged protein that accumulates. To say they are excited about the results they are getting early on is an understatement. Right now they are testing people with advanced Parkinsons for 9 months. There are three spinal fluid tests done to determine the level of this protein they are trying to eliminate, before, during and after the trial. After this trial then there will be a trial for early, moderate, and advanced PWP starting around October or November of this year. They have told me I'm eligible to participate and they will give me more information on the trial when I'm back to see them in May. The trial now in progress is fully funded by private donations, the patients. MJFF is waiting for the results of this first trial before deciding if they will do any of the future funding. That's pretty much all the information I have on this trial at the moment. I'll let everyone know what's happening after I go back in May.

Take care and good luck with your tune ups.
Betsy