APDA American Parkinson Disease Association
Information & Referral Center

DBS Stories

Relevant Online Information

“DBS Expectation,” by Darcy Blake
Published by ParkinsonsWomen.com, June 12, 2017
This blog post is a first person account of Darcy Blake’s experience during the ‘breaking in’ period and programming after DBS.  Eleven weeks after her second DBS surgery she discusses the challenge of expecting too much from the procedure, as did Dr. Michael Okun at the 2016 World Parkinson Congress in Portland, OR.


“My DBS Story,”
 by Bev Ribaudo
Published by My DBS Story Blog
This blog details the DBS journey of Bev Ribaudo, aka YumaBev, author of the Parkinson’s Humor blog, who had DBS surgery in October of 2012 to help relieve the motor symptoms of Parkinson’s disease.  She begins with a list of things you should consider before having DBS.  She then explains with some humor the DBS surgical and programming process, followed by her personal DBS story.


“Deep Brain Stimulation Surgery Helps Parkinson’s Patient Get Her Life Back to Normal,”
 by Tony Craine
Published by the University of Iowa Hospitals and Clinics, Fall 2016
This story of the journey to and through DBS surgery by Linda Stambaugh, or Browning, IL, describes her physical decline, her fear of the DBS procedure, a chance encounter that made her decide to go through with DBS, and volunteering at the medical school to demonstrate symptoms with and without DBS.


“From Our Patients: Personal Stories of Courage, Hope and Recovery”

Published by the Movement & Neuroperformance Center, Colorado
This web page has several stories by people seen in the Movement & Neuroperformance Center’s DBS Troubleshooting Clinic, which has restored function and eliminated side effects in over 24 people since 2007.


“Jasmine’s Journey”

Published by Jasmine Sturr on YouTube
This series of 28 videos (and growing) include her DBS experience, educational talks, interviews with Rock Steady Boxing instructors, and personal experiences, gastroparesis, feeding tubes, speech therapy, etc.


“Koki’s Experience of Deep Brain Stimulation”

Published by Parkinson’s UK
In this short testimony, Koki expresses how taxing the adjustment was to having the DBS electrodes because first ,you have to recover from the surgery and wait four weeks for some healing to take place before they switch it on, then there are programming and medication adjustments.  “But when it settled down, wow - I got my life back.”


“My Experience of Deep Brain Stimulation”

Published by ABC.net Australia, December 11, 2014
This is a rather long account of a man diagnosed in 1996 at 43-years-old who was forced into early retirement as his symptoms worsened.  In 2010 he underwent DBS and recalls the decision-making process and his memories of the operation, itself.


“Unique Aspects of the Diagnosis & Treatment of YOPD: A Patient’s Perspective,”
 by Steven Milke
Published by the American Parkinson Disease Association
This speech given by Steven Milke on February 13, 2010, describes his diagnosis in 2002 after two years of seeking a diagnosis, his development of dyskinesia and tremors that led him to consider having DBS surgery in 2007 and finally following through with it in 2009, the process, and his result.


Relevant Online Videos

“Brain Surgery Live with Mental Floss”
By the National Geographic Channel
This 1:25 hour video captures an awake deep brain stimulation (DBS) surgery on Greg Grindley, a veteran with Parkinson’s disease.  Blending live coverage from the operating room at University Hospitals Case Medical Center in Ohio, with segments that chronicle what science and medicine have historically taught us about the brain, along with what is yet to be discovered.
View the trailer and video clips here.
Watch the full program here for $2.99, $3.99 for HD.


“Deep Brain Stimulation for Parkinson’s Disease”

By Attitude, July 26, 2016
In just 27-minutes we follow Andy McDowell, a 48-year-old marketing consultant, husband and father to two young girls with early onset Parkinson’s disease, in the lead-up to his first Deep Brain Stimulation (DBS) surgery.  When switched on, wires deeply embedded in his brain help him regain some control of his body.


“Deep Brain Stimulation Surgery to treat Parkinson’s Disease at Mount Sinai Hospital”

By Mount Sinai Health System, April 18, 2013
This 19-minute video shows DBS surgery on Michael Toscano, a retired New York City police officer who was diagnosed with Parkinson’s disease in 1997 at 34-years-old.  His first DBS electrodes were removed for medical reasons, although it was very effective, so this is his second DBS surgery.


“Living With Parkinson’s: Sandra Ransel’s Story of DBS”

By Vegas PBS Documentaries, January 8, 2015
In this 26-minute video, we meet Dr. Sandra Ransel, a Las Vegas high school principal diagnosed with Parkinson’s disease over 20 years ago, and follow her as she undergoes DBS to help her manage her condition.


"Deep Brain Stimulation and Parkinson's Disease" 
By the Veteran's Administration
This 10-minute video alternates between an interview with a young man who elected to have deep brain stimulation (DBS) and his wife, with doctors explaining how a DBS unit is implanted, the benefits of DBS, possible complications of DBS surgery and the programming process.

 


This list of resources was compiled by Denise Dagan for the Stanford Parkinson's Community Outreach Program, June 2017.

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