The National Organization for Tardive Dyskinesia, a 501c3 nonprofit charity, was started by Kathleen A. Shea in 2019 in response to the need for a national organization for this condition that disables so many. Ms. Shea began exhibiting symptoms of orofacial TD, with burning oral tardive pain, while withdrawing from Seroquel, which she had taken for fourteen years for insomnia. Her experience interacting with others with TD and tardive syndromes opened her eyes to the devastation this disorder can cause.
Ms. Shea has a background in public health and epidemiology, so she has a passion for people and healthcare. She has used this passion to spearhead this first-ever nationwide organization for tardive movement disorders. The organization has identified the following services that it can provide to those who suffer from the disorder and those who treat it:
- Advocacy – The organization plans to advocate on behalf of the greater than 500,000 people in the U.S. who have tardive movement disorders. Recently there has been a push to recognize the disorder by establishing Tardive Dyskinesia Awareness Week, which occurs the first full week of May. In the past three years, 30 states have adopted this week as official state policy. Our organization is working with those who are striving to make these weeks recognized nationwide.
- Education (for physicians, patients, loved ones and the public) – There is widespread misunderstanding in the medical community that only people with severe mental disorders who take antipsychotic medicines can develop TD. In reality, TD can afflict those who take a wide variety of pharmaceutical drugs. The organization’s website aims to offer a one-stop online resource to educate about the disorder.
- Outreach – The organization will reach out to the community at large through social media and through appearances at conferences and seminars to help increase TD awareness.
- Community building – The organization will facilitate the building of the TD community by bringing together those who suffer from the disorder, those who research it, those who treat it, and others who are impacted by it through online webinars and social media.
- Access to experts – The organization will act to bring experts in movement disorders to the wider medical community through webinars and conferences.
Our Founder’s TD Story
Though Ms. Shea began experiencing orofacial movements and oral sensory pain in late June 2018 when she started withdrawing from Seroquel (which she had taken for fourteen years for insomnia as mentioned above), she was not diagnosed with TD until October 2018. She began taking amantadine in October 2018, with no success. A naturopath prescribed high-dose chelated manganese for her TD a month later. In six weeks her oral movements were completely gone and her tardive pain was minimal. She was overjoyed.
Seven weeks after starting the manganese, on Christmas Day 2018, she began having difficulty walking, intermittently. On New Year’s Eve, her uncoordinated walking ability became twenty-four hours a day. She also developed intermittent full-body tremors. She stopped the manganese that day. She had developed manganese toxicity. Within three days her tremors subsided, but she walked extremely slowly for weeks and her gait remained ataxic for over eight months. She now is cane-free and walking normally. She also had difficulty speaking for three months due to the manganese toxicity. She is grateful to have recovered as manganese toxicity often causes permanent damage to the basal ganglia of the brain, particularly the globus pallidus. When she stopped the manganese, her movements and sensory pain returned. She also has experienced Vitamin B6 toxicity after her first dose of B6 P5P, 200mg, confirmed by a blood plasma test, which fortunately resolved in a week.
After starting the process of applying for nonprofit status for NOTD, her autistic brother developed obvious symptoms of TD, affecting the head/neck and mouth with vocal tics, most likely from many years on risperidone. He now takes Ingrezza for his TD and has shown remarkable improvement.
Movement Disorders Policy Coalition podcast with our Founder (8 mins.): In this episode, Kathleen Shea explains how her experience with tardive dyskinesia motivated her to create an organization to support other patients with TD.
Kathleen A. Shea, Founder and President
Kathleen holds a bachelor’s degree in Molecular and Cellular Biology from the University of Arizona. She has also earned masters’ degrees in Library and Information Science, and Public Health with an emphasis in Epidemiology, from the University of South Florida and the University of Miami, respectively. She and her brother both have tardive dyskinesia. She is the author of “Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How it Dramatically Altered Her Life”, which was released in December 2020. Kathleen is also a veteran of the U.S. Navy. She lives in Spring Hill, Florida, near her family.
Bill Cote, Treasurer
Bill holds a bachelor’s degree in Non-fiction Creative Writing from the University of Southern New Hampshire. He has worked as a grant writer for the National Forensic Science Technology Center and the Coalition for the Homeless of Central Florida. He is author of several chapters of A Simplified Guide to Forensic Science and the children’s book, The Simple Little Salvation Story. He lives in Hudson, Florida, near his family.