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, and sharing of 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.  

About Tardive Dyskinesia

“Tardive” meaning late and “dyskinesia” meaning involuntary movement, is the result of treatment with dopamine receptor-blocking agents (DRBAs). Classic tardive dyskinesia (TD) involves involuntary, repetitive movements of the face, limbs, torso and/or other body parts. The term “tardive dyskinesia” refers to movement disorders resulting from use of these medications for longer than a few months according to The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). The most common group of medications that can cause tardive syndromes (an umbrella term encompassing a number of abnormal, involuntary movement disorders including classic TD) are antipsychotics and anti-emetics (anti-nausea drugs), though many other drugs have caused TD and other tardive syndromes. In many cases these syndromes are permanent. TD and other tardive syndromes can range from mild to life-threatening. Some form of TD affects at least 500,000 people in the U.S. and does not discriminate with regard to age, race, or gender. [Read more]

NOTD News

Our TD Awareness Week Video

For #TDAwarenessWeek in May, we produced a special video with five brave TD Warriors expressing what it’s like to live with TD. It is geared toward the public to raise awareness. Please watch and share our video: “Life with Tardive Dyskinesia.”

Movement Disorders Policy Coalition

Thank you to the Movement Disorders Policy Coalition for choosing NOTD as their featured member in May 2021. We appreciate all they do to bring together advocacy groups, providers, patients and others to inform policymakers about the need for patient-centered care for people living with movement disorders, including TD.

In this gripping video, people share their stories of what it’s like to live with tardive dyskinesia and how this disorder affects their day-to-day lifIt will be geared to the public to raise awareness. 

Congratulations to Our Founder!

Kathleen A. Shea’s memoir “Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How It Dramatically Altered Her Life” is now available in Kindle and paperback versions. While she is best known for starting NOTD, tardive dyskinesia is only part of her story. Be ready to be shocked by her account of her cataclysmic attempt at Seroquel withdrawal and how it changed her life forever. To date, her book has been read by individuals from the U.S., Canada, the UK,  Ireland, Italy, France, Malaysia and New Zealand. Please visit and like her author page. We also invite you to read her recently published Mad in America blog “From Wonder Drug to Catastrophe: My Seroquel Story.”

Looking for Caregivers

Caregiver Action Network is looking to connect with TD Caregivers for a storytelling project. Sharing your caregiver story helps others know they are not alone in this journey. For those interested in sharing their caregiver story, please contact Nichole Goble at: ngoble@caregiveraction.org. CAN will be providing a limited number of gift cards for those who share their story. Stories will be captured using your own smartphone.
 
“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!

#MonumentalMoments 

We are participating in the #MonumentalMoments campaign. This is an initiative to celebrate the ways that people with mental health conditions, including those living with TD, can process their emotions during these challenging times. Many of us are feeling anxiety, worry and helplessness. To be a part of this, it’s simple:

Post an image, video, or status update to social media that shows a moment that was meaningful in caring for your mental health.

Use the hashtag #MonumentalMoments

Visit http://MonumentalMoments.com to get inspired to prioritize your mental health and wellbeing and view others’ posts.

TD Medical Cards

Plastic TD medical cards with lanyards are now available. These are helpful when traveling or anytime you are in a situation where your movements may be questioned. If you would like a lanyard plus card, please email us at info@tdhelp.org with the subject line “TD Lanyard” and your name and address and they will be mailed to you, free of cost.

 

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.