The Misconception
If you were walking down the street and saw someone coming toward you, unpredictably moving their arms with occasional twitching movements, unable to keep a steady pace, and struggling with their balance, one might consider that this person has Parkinson’s Disease. We equate what we see when we observe someone living with the disorder because so many people worldwide suffer from the disease, not to mention the attention it has received from organizations such as the Parkinson’s Foundation and The Michael J. Fox Foundation. That familiarity, however, can be misleading. For many, especially those unfamiliar with movement disorders, it’s difficult to distinguish Parkinson’s from other conditions that may appear similar on the surface. However, around 30,000 people in the United States live with Huntington’s Disease.
Alan’s Experience
Alan Lucas, a 51-year-old retired mechanical engineer and father of two, spent his career at Whirlpool and General Electric, and carries the HTT gene mutation responsible for Huntington’s disease. He is one of six family members to inherit the mutation, which has been passed down through generations—from his grandmother to his mother, and now to him. In 2011, a genetic test confirmed that Alan carried the mutation and began showing symptoms of the disease in 2019. The test showed that the mutation in his gene count was at 44. Alan’s children, ages 17 and 15, have not yet been tested for the disease due to their age, but admits, one of them is struggling and is unsure if it is related to the disease or not.
In the early stages of Huntington’s disease, individuals often remain independent—many continue to work, manage their finances, and navigate daily life. However, emotional and social challenges can begin to surface, including depression, irritability, and difficulty relating to others. Alan feels he is still in the early stages of the disease and continues to lead a normal life, doing everyday tasks.
“I was struggling a little bit with finding my own identity after my kids,” Alan remarks, “and it’s been a while. But it’s been a few years, but still, I’m always wondering about what they’re doing every day, and not in a bad way, just kind of want to know what they’re up to, and trying to find a way to not do that as much. I did find God a couple of years ago, and that helped too.”
For Alan, he says his days look a lot like anyone else’s—he watches YouTube videos and follows NBA games—but struggles somewhat with routine; he grapples with depression, restless nights, and ongoing struggles socially in certain situations, all symptoms of the disease.
Photo By Chris Denny
What is Huntington’s Disease
Like Parkinson’s, Huntington’s disease is a neurodegenerative condition that causes the progressive breakdown of nerve cells in the brain, leading to involuntary movements, cognitive decline, and emotional disturbances. But unlike Parkinson’s, Huntington’s is always fatal. Parkinson’s patients experience a loss of dopamine due to the degeneration of neurons in a part of the brain called Substantia Nigra, which is believed to be caused by genetic and environmental factors, however with Huntington’s, the disease itself is directly related to a genetic mutation in the huntingtin gene (HTT, located on Chromosone 4,) discovered in 1993, a mutation that is passed down through families lines.
Behind the Disease
At the mutation’s heart is a repeating DNA sequence—C-A-G. (Cytosine, Adenine, and Guanine) While most people carry around 20 repeats, those with Huntington’s have 40 or more (Alan carries 44 repeats of the sequence). This genetic expansion is responsible for the gradual neurodegeneration a patient suffers. Tragically, anyone who inherits this mutation is certain to develop the disease at some point in their life.
According to the Huntington’s Disease Society of America (HDSA), Children of parents with the disease run a 50-50 risk of inheriting the expanded gene that causes the disease. However, in rare cases, the disease can appear much earlier, sometimes in childhood or adolescence, in what’s known as Juvenile Onset Huntington’s Disease. HDSA reports that there are approximately 41,000 Americans and more than 200,000 who are at risk of inheriting this disease. The NIH estimates that “about 2.7 out of every 100,000 people have Huntington’s disease. In higher-income regions like Europe, North America, and Australia, the number is closer to 5.7 per 100,000.”
Symptoms
Similar to those with Parkinson’s disease, individuals suffering from Huntington’s face uncontrolled and jerky movements, along with challenges in coordination, balance, and the unfortunate eventual loss of mobility. They may encounter difficulties with memory, focus, and the ability to make quality life choices that are essential for everyday success. As Huntington’s disease advances, individuals frequently experience a variety of cognitive, behavioral, and mental health symptoms. These can include mood swings, obsessive-compulsive behaviors, and conditions such as bipolar disorder. Many also exhibit changes in energy levels, behavior, and thought patterns, sometimes characterized by symptoms of mania, which can influence how patients perceive themselves and the world around them.
George Huntington (1850–1916)
George Huntington was a 22-year-old doctor living in Long Island, New York, and was the first person to describe the disease in his 1872 paper “On Chorea,” just after graduating from Columbia University. While he was not the first, Huntington’s account stood out for its clarity and accuracy, and helped define the condition now known as Huntington’s disease based mostly on case histories from his own family and affected families in and around his community.
Lessening the Burden of the Disease
While there is no cure for Huntington’s disease, there is a wide range of support and educational resources designed to help patients and families navigate the challenges it brings. From caregiver tools to social services, support is available at every stage. The Huntington’s Disease Society of America (HDSA) operates 60 Centers of Excellence across 37 states, offering access to therapists, neurologists, psychiatrists, counselors, and social workers, who provide care and guidance throughout the course of the illness.
The HDSA also offers downloadable guides and publications to help families better understand the disease and manage its progression. Just as with Parkinson’s, support groups play a critical role in fostering emotional resilience, offering a sense of connection, and reminding those affected that they are not alone on this journey.
Feature Photo Credit: Adobe Firefly for C. Denny
