Welcome to TDhelp.org
Thank you for visiting TDhelp.org, the online home of the National Organization for Tardive Dyskinesia (NOTD). This website provides numerous resources we hope you will find helpful such as discussion of self-help techniques, pharmaceutical and alternative treatments, information on our Zoom TD support groups, and patients’ personal stories. Remember, you’re not alone in this journey. We are by your side bringing hope and help to you and all those suffering with tardive movement disorders.
Life with Tardive Dyskinesia
NOTD News
Exhibited at Psych Congress’ NP Institute in San Diego (March 20-22, 2024)
We had a very productive and educational time at Psych Congress’ NP Institute in San Diego. We met some caring, passionate psychiatric nurse practitioners who were very interested in how we can support their TD patients! NOTD also debuted “Shake, Rattle, and Rock: Helping Children Understand the Challenges of Having a Loved One with Tardive Dyskinesia”…more to come…
A huge thank you to our Creative Director, Ruth Ann Rich. She and her son were the driving force behind the creative story for our soon to be released children’s book. We hope this book will help kids understand their loved one’s TD and to especially know that they are not alone. Many children have parents, grandparents and other loved ones with TD. To be notified when this book has been released, please add your email address to our list at the bottom of this page.
Kathleen A. Shea’s memoir, “Catastrophic Withdrawal,” describing how rapid quetiapine reduction dramatically altered her life is available in Kindle and paperback versions. While she is best known for starting NOTD, tardive dyskinesia is only part of her story. Her book has been read by individuals from the U.S., Canada, UK, Ireland, Italy, France, Germany, Japan, Israel, Greece, Malaysia, the Philippines, Australia, and New Zealand.
We will be traveling to San Francisco for the annual meeting of the American Psychiatric Association. We will be raising awareness with psychiatric practitioners of the real impact TD has on their patients and the support NOTD can provide their patients with TD. If you’re a healthcare provider and will be attending, please stop by our Booth #2066 (near the Neurocrine Biosciences and Teva Pharmaceuticals exhibits). Hope to see you there!
TD Awareness Week! May 1-7
The 6th annual Tardive Dyskinesia Awareness Week (May 1-7, 2023) is now recognized by all 50 states and the District of Columbia. You can do your part to raise awareness by using the hashtags #TDAwareness or #TDAwarenessWeek with your social media posts about TD during the first week of May.
Our 2nd trip to Capitol Hill!
On April 26th, we visited Washington, D.C. for our second annual Congressional fly in. People living with tardive dyskinesia (TD) and their care partners shared stories with 15 Congressional offices and their staff about how TD, an involuntary movement disorder associated with use of antipsychotics or anti-nausea drugs, has impacted their lives.
We’ll be returning to Washington, DC to advocate for TD!
NOTD will travel to Washington, D.C., the last week of April to raise awareness regarding TD. This year we will be bringing 7 people with TD and their caregivers to share their stories about how TD has impacted multiple aspects of their lives.
NOTD’s 3rd Birthday!
October 30, 2022 was our birthday! Thank you for all your support as we advocate, educate and raise awareness of this debilitating, medication-induced movement disorder. If you’d like to see highlights of the past 3 years, visit: facebook.com/TDHelp
NOTD Exhibits at NEI Congress
To raise awareness of TD and NOTD’s mission, we exhibited at the Neuroscience Education Institute (NEI) Congress in Colorado Springs from Nov. 3-6. We had the opportunity to interact with a number of psychiatrists and movement disorder specialists very interested in helping those with TD.
NOTD Exhibits at AAPA Annual Conference
From May 21-23, 2022, the National Organization for Tardive Dyskinesia exhibited at the American Academy of Physicians Associates Conference in Indianapolis. This meeting was attended by 2,900 Physician Assistants/Associates and PA students. Mental health was a predominant theme of the conference — the opening session featured Jane Pauley and gymnast Simone Biles who shared their inspiring stories of overcoming mental challenges and reducing the stigma associated with mental illness.
TD Symptom Tracker App
NOTD is proud to announce that our one-of-a-kind smartphone app to track TD Symptoms is now available in the Apple App Store (for iPhone, iPad) and the Google Play store (for Android). This app makes it easy to record your involuntary movements and chart the progress of any TD treatments. You can also keep track of sleep, stress and even caffeine intake so you can monitor the effect of TD triggers.
It’s HIPAA compliant and encrypted so you can feel confident that your data is secure. To download it now, visit the Apple App Store or Google Play Store.
“Treatment of Tardive Syndromes” webinar
We invite you to learn about your options for managing TD. The highly-accredited Dr. Stewart Factor, Director of the Movement Disorders Clinic at Emory University (with a passion for tardive syndromes research) discussed medication, over-the-counter remedies and surgical options to reduce the unintentional, uncontrollable movements of TD. View our webinar here!
TD Medical Cards
These are helpful when traveling or anytime you are in a situation where your movements may be questioned. If you would like a plastic card indicating that you have TD and describing TD for your wallet, or a lanyard plus a card to conveniently display it, please email us at info@tdhelp.org with the subject line “TD Card/Lanyard”. Include your name and address in the email and it will be mailed to you, free of charge. (To see a picture of the eye-catching card, visit: https://tdhelp.org/resources/ and scroll about 3/4 of the way down the page.)
NOTD does not engage in the practice of medicine. The organization is not a medical authority. In all cases, NOTD recommends that you contact a physician regarding any course of treatment for tardive syndromes.
TD Symptom Tracker App Now Available!
- Easily record involuntary movements
- Chart the effect of TD treatments
- Visualize symptom trends over time
- Email/text results to your physician(s)
- Record emotions such as anxiety, depression, or happiness
- Track lifestyle factors such as sleep, exercise, and stress
