Margaret Tuchman, Deep Brain Stimulation patient and founder of DBS-STN.org

We are pleased to announce that DBS-STN.org has been renamed DBS4PD.org

Since DBS-STN.org started in 2003 , our goal has always been to provide information to the Parkinson's Community related to deep brain stimulation surgery.  While the focus was in the STN, we know DBS is successful in other areas.  To make it clear that our organization is for anyone considering DBS surgery of any type, in March 2013 we were renamed DBS4PD.org. 

On behalf of DBS4PD.org, I invite you to get involved.

DBS4PD.org is committed to helping improve the quality of life of DBS-STN patients and their caregivers. Through patient and caregiver surveys, we are not only asking questions but providing answers that will help the DBS-STN community. Please join us in coming together, discussing issues, and answering questions.

Margaret Tuchman, Founder of DBS-STN.org, President of The Parkinson Alliance, and DBS-STN patient 12/00

 

A Consensus Meeting to Discuss Deep Brain Stimulation for Parkinson’s Disease

On April 1st-3rd, 2009 The Parkinson Alliance (with shared sponsorship provided by the Davis Phinney Foundation, the LSVT Foundation, and the National Parkinson Foundation) convened a panel of the world’s experts on DBS for PD.  The task assigned to these experts was not to craft a typical consensus statement for themselves, but to come up with a document aimed squarely at their true customers—the patients. These world leaders discussed the current matters related to DBS therapy and where we need to go with this intervention. The ultimate focus was on improving the effectiveness of the intervention and the quality of life of those individuals who have undergone or those who will choose to undergo DBS.

The topics of the Consensus Meeting were many and included patient selection, gait and speech DBS outcomes, non-motor DBS outcomes (mood and cognition) and long-term DBS outcomes, to name a few.  The final report has been published and can be read by clicking on the following link:

Click on the link below for a full report on the DBS Consensus

Deep Brain Stimulation for Parkinson Disease: An Expert Consensus and Review of Key Issues

Jeff M. Bronstein, MD, PhD; et al
Arch Neurol. Published online October 11, 2010. doi:10.1001/archneurol.2010.260

Also, at the conclusion of the Consensus Meeting, a group of PD patients with and without DBS was invited to an open forum where several clinician shared their experiences and answered the participants' questions. The summary describing the important dialogue between patients and clinicians about many of the commonly asked questions that exist in the PD community can be read by clicking on the following link:

View a written report of the Patient Forum that occurred at the Consensus Meeting.