Implementing practical strategies to stay safe with chorea

My journey with invisible muscle movements known as chorea began in 2010, before I knew that Huntington’s disease was part of my story. It started with subtle, writhing movements in my toes. At first, the movements seemed small and easy to dismiss. I didn’t understand why they were happening, or what they would eventually mean for my life.

Over time, the movements progressed from my toes to my fingers. Eventually, they spread throughout my body, affecting my upper trunk, arms, legs, and face. For a period of time, I even experienced vocal tics. My body seemed to be moving according to its own rhythm, regardless of what I wanted it to do.

Chorea, a common symptom of Huntington’s, can be exhausting because it’s not simply an occasional twitch. It can feel like constantly negotiating with a body that doesn’t always respond the way I expect it to. The movements may be subtle one moment and much more noticeable the next. They can affect balance, coordination, posture, walking, writing, eating, and other activities that many people complete without thinking.

I am extremely grateful for the medication I take twice a day to help manage chorea, as it significantly reduces the severity of my movements. In many ways, it helps to hide what is happening inside my body. Someone meeting me today may not immediately realize how intense my movements can become without treatment.

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Adaptations that become survival strategies

However, improvement doesn’t mean my chorea has disappeared. I still experience involuntary movements every day. My fine motor skills are affected, and seemingly simple activities can become frustrating. Polishing my nails, for example, is a challenge because my fingers may move before the polish reaches the right place. Sometimes writing by hand is difficult. Tasks requiring precision may take longer or require more concentration than they once did.

Stress is one of my greatest triggers. Even with medication, anxiety, fatigue, overstimulation, or an emotionally difficult situation can bring out my choreatic movements. The more I try to force my body to remain still, the more aware I can become of every movement. This can create a cycle in which I become self-conscious, my stress increases, and the movements become more noticeable.

Over the years, I have consciously and subconsciously developed ways to hide the presentation of my symptoms. I have carried bags in ways that helped balance my posture or made certain movements appear more intentional. Sometimes I reposition my body, hold an object, cross my arms, or shift my weight to look more like everyone else around me.

These adaptations became survival strategies. I wanted to move through public spaces without standing out, being stared at, or having people make assumptions about me. I learned how to make an involuntary movement appear purposeful. I learned how to camouflage symptoms before I even realized that was what I was doing.

That instinct takes me back to earlier moments in my diagnosis when my chorea frightened or confused people. I’ve been met with suspicion that I was using drugs, intoxicated, or experiencing a mental illness. Instead of asking whether I needed help, people sometimes watched me with fear or judgment. Those experiences made me feel as though I had to prove that I was safe, competent, and deserving of respect.

Today, staying safe is more important to me than perfectly hiding my symptoms. I wear supportive shoes, avoid rushing, use handrails, and remain aware of uneven surfaces. I keep pathways in my home clear and reduce unnecessary clutter. When I am tired or my movements are stronger, I slow down and allow additional time. I’ve also learned that using assistance is not failure. A cane, walker, shower chair, wheelchair, or other mobility aid can provide safety and preserve independence.

Physical therapy, occupational therapy, and speech therapy can also offer practical strategies. Therapists can recommend exercises, adaptive equipment, safer ways to complete daily tasks, and techniques for conserving energy. When fine motor activities become difficult, larger-handled tools, voice-to-text technology, and asking for assistance can reduce frustration.

Comfort also matters. Stretching, gentle movement, mindfulness, adequate rest, and reducing overstimulation can help me feel more grounded. I try to recognize when my body is communicating that it needs a pause. I cannot always control the movements, but I can control how compassionately I respond to myself.

I still sometimes feel pressure to appear “normal,” especially in public. However, I am learning that my body doesn’t owe anyone stillness. Chorea is not intoxication, a lack of intelligence, or a reason to fear someone. It is a neurological symptom.

Medication helps me manage my movements, but self-advocacy, safety planning, and self-compassion help me live with them. My body may move differently, but I am still fully present, fully human, and worthy of being treated with dignity.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.