Overcoming the Challenges of Managing Tardive Dyskinesia in Rural America
Tardive dyskinesia (TD) is a condition that causes your face, your body, or both to make sudden, repetitive movements that you can’t control. It commonly results from the long-term use of antipsychotic medications that are prescribed for mental illnesses, including schizophrenia, bipolar disorder, and major depression. For people who live in rural America, coping with TD can present unique challenges due to limited healthcare resources, social stigma, and transportation barriers.
In addition to providing coping strategies for TD that are especially relevant for rural residents, this blog includes lived experience shared by Todd Donovan, who is managing TD in a rural community.
Growing up in rural southern Oregon during the seventies and eighties, Todd struggled with major depression during his childhood, as he recently described in a Rural Minds webinar. After attempting suicide at 18 years of age, he was hospitalized and prescribed two medications. Todd developed TD after about six months on the medications, including some involuntary movements of his mouth and blinking. “The doctors immediately took me off the one medication,” said Todd, “but I remained having these movement problems the rest of my life.”
TD is estimated to affect about 800,000 people in the U.S. However, studies indicate that only about one-third of people with TD have been diagnosed. When diagnosed early, TD may be reversed or the severity of symptoms can be lessened with the right treatment plan, which may include changing current medications or prescribing an additional medication to help improve TD symptoms.
Challenges of Diagnosing and Living with TD in Rural Communities
“Growing up in rural Oregon – a very remote area, 40 miles from the closest large town and 30 miles from the closest hospital – we didn’t talk about depression or movement disorders,” said Todd. This exemplifies challenges many rural residents with TD may confront in getting prompt diagnosis and treatment for the condition due in part to the following circumstances:
Lack of access to neurologists and movement disorder specialists is one of the biggest obstacles rural residents with TD face, which can lead to delayed treatment or misdiagnosis.
Rural residents with TD must travel long distances to urban centers to receive proper care. In some cases, the involuntary movements associated with TD can make driving unsafe. Combined with a lack of public transportation options in rural areas, people with TD must rely on their family, friends, or community services for transportation, which may not always be available.
Mental health conditions still carry stigma in rural communities and the visible symptoms of TD can add another layer of social discomfort and misunderstanding.
There’s limited awareness and education about TD. Not only may individuals who develop TD symptoms hesitate to seek medical support due to lack of awareness, but many rural healthcare providers may not be familiar with TD, leading to misdiagnosis of the symptoms.
Key Strategies for Managing TD in Rural America
Maintaining communication with your healthcare provider and incorporating healthy lifestyle habits are among the most important ways to manage TD:
Be proactive in monitoring your TD symptoms by seeing your healthcare provider regularly.
Seek in-person consultations with a movement disorder specialist or neuropsychiatrist, making travel plans when necessary.
Consider using telehealth services to remotely consult with medical specialists.
Manage your stress with methods such as yoga, breathing, and mindfulness exercises.
Incorporate healthy lifestyle habits to help manage TD symptoms, including regular exercise, a well-balanced diet, and sufficient sleep.
Join support groups – either locally or online – to connect with other people who understand your experiences.
Educate yourself about TD and treatment options to make informed decisions about your care.
“You Can’t Give Up – Treatment Works”
After many years of struggling with treatment-resistant depression, Todd eventually found a treatment that helped him. “I kept trying until something worked,” he said. “You can’t give up – treatment works. Do whatever you have to,” he advised, “to get the treatment that you need.”
Todd emphasized that he would not change – nor does he regret – taking the medication that caused him to develop TD. “I knew I was sick and I had an illness,” he said, “and I had to do something.”
Todd recently relocated to rural North Carolina from a rural area of southern New Hampshire, retiring from a career as a fire lieutenant and 35 years as a paramedic. While acknowledging that some people he meets may wonder about his TD symptoms, which include blinking and facial movements, Todd said, “I’m really fortunate. It doesn’t bother me that much.”
Living with TD in rural America comes with its challenges. But with prompt diagnosis and finding the right resources and support, people with TD can manage their symptoms to improve and maintain their quality of life.
For more information and resources for TD, click here to download a Tardive Dyskinesia Fact Sheet.