- With an estimated 6 million people worldwide living with Parkinson’s, and an estimated 60,000 newly diagnosed annually, resources to help navigate available treatments to manage Parkinson’s care are critical
- New resource for patients and families — authored by MJFF’s Senior Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD — offers informative considerations and personal reflections from those living with Parkinson’s and their care partners on deep brain stimulation as a Parkinson’s treatment
- Download the free guide at michaeljfox.org/DBSguide
NEW YORK (June 15, 2021) — As part of its mission to offer people living with Parkinson’s and their families with high-quality educational resources on navigating the disease journey, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) today launches “Deep Brain Stimulation and Parkinson’s — From Decision-making to Daily Life with the Device.” The new resource, available at michaeljfox.org/DBSguide, educates patients and care partners about deep brain stimulation (DBS) surgery as a treatment option to help manage symptoms, provides practical tips for thinking about, undergoing and living with DBS, includes perspectives and voices from the patient and family community; and shares the latest research and DBS devices available.
New Guide Developed by Parkinson’s Experts Provides Answers to Questions on DBS
The new resource on DBS and Parkinson’s disease (PD) was written by MJFF Senior Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD. The guide, medically reviewed by leading Parkinson’s physicians and DBS experts, was designed to include personal reflections and anecdotes from families who experienced DBS. In addition, the Foundation sourced common questions, themes, and tips on DBS through MJFF’s social channels and its diverse community of people and families living with PD.
“Some of the most common questions from patients and families — whether they’ve been recently diagnosed or have lived with Parkinson’s for many years — are around DBS,” said Rachel Dolhun, MD. “The goal of this guide is to provide information about the DBS journey, everything from thinking about the treatment option to having the procedure and beyond. And ultimately to empower people and families to learn more, ask questions, or start conversations about this treatment option.”
Patients and loved ones can use this 22-page guide to:
- Begin learning about DBS as a treatment option and whether it’s right for them, and the symptoms it may or may not help;
- Prepare practical questions to discuss with your doctor and loved ones before DBS surgery, during surgery and life after;
- Assess general guidelines and tips for practicing regular activities while living with DBS;
- Provide information on the latest devices available and ongoing research.
The free guide is available to download at michaeljfox.org/DBSguide. A webinar, featuring Parkinson’s experts and community members featured within the guide, also will be available on Thursday, June 17 at 12 p.m. ET. Register for the free webinar here.
“Deep Brain Stimulation and Parkinson’s — From Decision-making to Daily Life with the Device” was made possible through support from Abbott Laboratories. Funding from our industry partners allows the Foundation to maintain editorial oversight in the creation of high-quality educational resources, while directing donor-raised dollars toward critical research.
“At Abbott, we are focused on developing life-changing deep brain stimulation technologies that seamlessly fit into a person’s life and treat the symptoms of their disease,” said Binith Cheeran, MD, Director of Medical Affairs for Neuromodulation, Abbott. “By partnering with The Michael J. Fox Foundation, we are able to help provide people living with Parkinson’s disease and their families the educational resources they need to make informed treatment decisions to help them live their lives to the fullest.”
About Deep Brain Stimulation and the Evolution of Research
Although deep brain stimulation isn’t a treatment option for everyone with PD, those who are candidates may see a substantial benefit in decreased motor symptoms and medication needs following the procedure. Today, an estimated 6 million people worldwide live with Parkinson’s, a number that is expected to double by the year 2040. With an expected increase in the number of people affected by PD, resources to better understand and navigate available Parkinson’s treatments are urgently needed.
Since the first DBS device was approved by the U.S. Food and Drug Administration (FDA) in 1997, it is estimated more than 160,000 DBS devices have been implanted worldwide for those living with PD, essential tremor, dystonia (muscle contractions), obsessive-compulsive disorder (OCD) and epilepsy. Patients and families typically consider DBS after being diagnosed with the disease at least four years, have trouble with how long their medications work, or have dyskinesia (involuntary movement).
Researchers are actively working to improve upon existing DBS devices and methods to help treat more symptoms and patients. Since inception in 2000, MJFF has funded more than $9 million in research into DBS for Parkinson’s. Supported efforts aim to discover new brain targets for DBS and upgrade system technology to ease more symptoms, optimize outcomes and improve the user experience. Additionally, the Registry for the Advancement of Deep Brain Stimulation Therapy in Parkinson’s Disease (RAD-PD) — an MJFF-funded study — aims to guide DBS care decisions by gathering clinician-measured and patient-reported data on the experience, methods and outcomes of DBS. RAD-PD findings could help better understand, for example, best DBS settings for symptom control, potential side effects and gaps in access to DBS therapy.
Other Foundation programs are helping build data and speed research on DBS and additional aspects of PD. MJFF’s landmark Parkinson’s Progression Markers Initiative study is expanding from nearly 1,400 to more than 4,000 participants — with and without Parkinson’s. Volunteers provide data through clinical exams, brain scans and contribute biological samples in pursuit of transforming how we diagnose, track, treat and potentially prevent PD. Launched in 2010, PPMI hosts an open-access data set that includes information on some volunteers with DBS. And Fox Trial Finder, MJFF’s online clinical study matching tool that connects volunteers with recruiting studies in their area, lists more than 40 studies investigating DBS and Parkinson’s.
“Everyone’s Parkinson’s journey is unique, and so are the treatment options,” said Jim McNasby, JD, guide contributor and MJFF’s Chief People Officer who lives with Parkinson’s. “DBS provided me an opportunity to take less medication and feel a sense of independence again. My husband Donny and I welcomed the opportunity to provide our input and personal story for this guide as we know many families seek resources to better educate themselves on all aspects of the disease.”
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
The Michael J. Fox Foundation