Talking Essential Tremor: Recent Episodes
International Essential Tremor Foundation
We’re exploring all aspects of essential tremor: symptoms, diagnosis, treatments, support, new research, and more. Hosted by the International Essential Tremor Foundation.
Amber is an early childhood educator who is working to increase essential tremor awareness. Her goal is to place a copy of the children's book "Shaky Quaky Jake" in Head Start locations in the south. Learn more, including how to get involved, through the podcast or by reading her story online.
Bobby Krause, founder of the Be Still Foundation, shares his personal story of being diagnosed with early onset Parkinson's disease, which led to the formation of the Be Still Foundation. The foundation helps cover the costs, raise awareness and provide education on the benefits of Focused Ultrasound treatment for those in need of tremor relief. This includes people with Parkinson's disease and essential tremor.
The well-known philanthropist and businessman Jimmy Walker talks about his essential tremor, his many charitable events and his philosophy about serving others.
Marsha Rodgers, @Shakeyfree24, talks about her essential tremor journey, including ET's debilitating impact, her successful treatment and how she's raising awareness and providing hope for others.
Learn about the making of the "Still Honeyman" documentary film, which shares Mark Honeyman's inspirational journey through deep brain stimulation surgery to calm his essential tremor. Executive Producers J.R. Heffelfinger and Alex Walters, and Mark Honeyman himself are part of this discussion. "My mission as an artist is to unveil hidden truths about the human condition, to amplify the voices of the voiceless and to make the invisible, visible and I believe we did that with this film," according to Heffelfinger.
HandiThings is a family-owned business that manufactures and sells weighted products to assist patients with essential tremor. Owner/manager Brian Heinz shares his family’s story.
Steadiwear will begin taking pre-orders for the third version of its tremor glove, Steadi-3 in October 2024. Steadiwear Co-Founder and CEO Mark Elias talks about the updates, which include a lighter weight and smaller size, in this podcast.
VILIM ball is a handheld mechanical therapeutic device that provides neuromodulation therapy to temporarily reduce hand tremor for patients with essential tremor. This is a conversation with creator Dr. Mantas Venslauskas, CEO of the Lithuanian-based company Vilimed. He talks about how VILIM ball works, how it was tested and warns against less expensive imitations. The company released VILIM ball for purchase in 2018 in European countries, then expanded distribution to the U.S. and other countries in 2023.
Author Kelly Roberts talks about her children’s book “Shaky Quaky Jake” whose main character is a child with essential tremor (ET). Kelly’s overall message is “every child needs to be accepted and loved for who they are, as they are.”
People with essential tremor are always looking for assistive technology to enhance their quality of life. David Baker, director, Missouri Assistive Technology, talks about the services U.S. assistive technology centers provide in each state, including assistive device demonstrations and loans.
Essential tremor may cause physical limitations in the workplace. At what point should you inform your employer? Fred Gutermuth talks about his experience.
Dr. Brianna Matzke, assistant professor of music at Wilmington College, announced her essential tremor diagnosis as part of a commissioned arts project called TREMOR: The Response Project. She has commissioned artists and composers to create piano, visual art and multimedia exploring the lived experience of ET, but more importantly, ability and disability.
Jillian Mars has spent the past two years working to make an impact on essential tremor (ET) awareness. As a contestant in the Miss New Hampshire Scholarship Program she has adopted ET as her community service initiative, and has been educating others during appearances and speeches. She talks about her journey with ET.
Tish Hevel, CEO of the Brain Donor Project, explains the process of becoming a brain donor. Brain donation is critical to the role of identifying treatments and cures for all kinds of brain disease, including essential tremor.
Four to five years after undergoing focused ultrasound (FUS) to treat their essential tremor, patients are continuing to endure benefits. In this podcast, Dr. Rees Cosgrove, director of epilepsy and functional neurosurgery at the Brigham and Women’s Hospital in Boston, talks about the study and the enhancements made to FUS.
Cala Trio continues to be an effective therapy for managing essential tremor, according to a recently released study by Cala Health. Liana Hennum, head of health economics outcomes research for Cala, talks about other positive outcomes revealed in this study.
Research shows that one of every 100 people on the planet has essential tremor (ET). This is one of the many results published in the article, “How Common is Essential Tremor? Update on the Worldwide Prevalence of Essential Tremor.” Learn more statistics in this podcast interview with co-author of the study, Dr. Elan Louis, professor and chair of the department of neurology at the University of Texas Southwestern Medical Center, Dallas.
Much has happened in the field of tremors in the past 10+ years and a newly published book, “Tremors” brings it all together. It shares recent developments in understanding tremor pathology and genetics, as well as the clinical findings in treatment models. Listen to this conversation with one of the co-editors Dr. Claudia Testa, with the University of North Carolina School of Medicine.
Her goal is to find one person every day to educate about essential tremor. She uses the name Shakey Nan, and posts videos on YouTube, TikTok, Facebook and Instagram, not only talking about it, but also showing it first-hand. She said she’s never known a day without ET, and raising awareness has made her less self-conscious and has given her back her life.
Her goal is to find one person every day to educate about essential tremor. She uses the name Shakey Nan, and posts videos on YouTube, TikTok, Facebook and Instagram, not only talking about it, but also showing it first-hand. She said she’s never known a day without ET, and raising awareness has made her less self-conscious and has given her back her life.
Navy Veteran Peder Nelson is training for his second Cloudsplitter 100, a 100-mile ultramarathon. His goal is to raise awareness about essential tremor and support for the mission of the International Essential Tremor Foundation. Hear his ET story and learn how exercise helps him emotionally and physically. Follow his story and journey on his Difficult Destinations Facebook page, https://www.facebook.com/Jalap3dr0.
Learn about Allevx, a neuromodulation wrist device for treating essential tremor, developed by Allevion Therapeutics. IETF Executive Director Patrick McCartney talks with Allevion’s CEO and Chairman Shawn Moaddeb and Board Certified Neurologist Dr. Neal Hermanowicz.
The Readi-Steadi Anti-Tremor Orthotic Glove System was developed to help patients gain control of their hand tremors. Creator Krista Madere, licensed occupational therapist and certified hand therapist, shares her story about this medical device that, on average, provides a 50 percent reduction in tremor.
Jazz Pharmaceuticals is investigating a drug that acts to modulate the activity of t-type calcium channels associated with essential tremor. The investigational process and the work of Jazz is explained by staff members Michelle Baladi, senior director of global development, and Margaret Lee, head of neuroscience pharmacology.
Steadiwear has introduced a second version of its smart glove, the Steadi-Two, developed to stabilize hand tremors. CEO Mark Elias discusses upgrades made to this device and how it works, plus feedback the company has received from the essential tremor community.
Diagnosed with voice tremor and spasmodic dysphonia in 2019, singer-songwriter Terri Hendrix has come to realize that attitude is everything. She advises aspiring musicians with essential tremor to own the condition. Her management techniques include vocal exercises, medication and sometimes a shot of alcohol. Be sure to listen until the end because we share Terri's song "Love You Strong" off of her "Love You Strong" Album. The song talks about loving someone strong to help them get through difficult times.
Dr. Elan Louis, professor and chair of neurology at University of Texas Southwestern Medical Center in Dallas, discusses the COGNET Study. More than six years ago, this research was started, following hundreds of ET patients to study their cognitive function over a span of time.
Lord Julian Fellowes, English actor, novelist and screenwriter best known for creating the television series Downton Abbey, has lived with essential tremor for the past 10 years. He is credited for escalating awareness of ET by writing it into the Downton Abbey storyline. In this podcast, he talks about how having ET changed his career.
If you’re considering Deep Brain Stimulation therapy to help manage your essential tremor, what questions should you be asking? Learn this and more from this conversation with Dr. Binith Cheeran, movement disorders specialist and medical director for neurological therapies at Abbott Labs.
Did you know that brain disease affects more people than heart disease and cancer combined? Katie Sale, executive director of the American Brain Coalition, talks about the mission and advocacy work of the ABC, which serves as an umbrella organization for more than 100 brain-related professional organizations and patient advocacy groups, including the IETF.
Listen to this panel discussion with some of the IETF’s Essential Tremor Support Group leaders. Learn what motivated some of these leaders to start their group, the rewards and challenges of being a leader and how to get one started in your area.
He took real world technology used in industry and formatted it for human use to calm hand tremors. Hear how Dr. Leo Nguyen, associate professor of mechanical engineering at California State University, used his expertise to create the Tremelo hand-stabilizing device. He is the founder of Five Microns.
Mark Honeyman went from being an only child to having 7 siblings and 37 nieces and nephews. Adopted at birth, he started a search for his birth parents several years ago to learn where his essential tremor came from. That led him on a journey with many twists and turns, and fascinating stories. He says having ET has humbled him and made him a better person. “And it’s led to so many insights that I’m profoundly grateful for it.”
Sage 324 is an oral investigational drug which is thought to enhance the activity of GABA receptors in the brain tremor, having the potential to modulate electrical fluctuations and reduce the abnormal movements in essential tremor. Listen to this podcast with Helen Colquhoun , VP of Development with Sage Therapeutics.
Learn how a DaTscan can help neurologists understand the cause of a patient’s tremors. GE Healthcare's Mark Hibberd, global head of medical services and chief medical officer of pharmaceutical diagnostics. explains.
IETF scholarship recipient Madison Young talks about her initial essential tremor diagnosis and how she has learned to explain her condition to others. She expresses her gratitude to those who support the IETF’s scholarship program. “I love having the support of the community behind me,” she said.
How does focused ultrasound work to help manage essential tremor? Listen to our interview with Dr. Arjun Desai, chief strategy and innovation officer with Insightec, a leader in this incisionless technology.
It’s a watch-like device that stimulates nerves in the wrist to interrupt, and therefore, calm tremors in the hands. Listen to this conversation about the Cala Trio with Cala Health CEO Renee Ryan.
Are you a good candidate for DBS therapy? What are the benefits and risks? Lisa Johanek, senior principal medical affairs scientist with Medtronic, answers these questions and more in our first Talking Essential Tremor podcast.