Huntington’s Disease (HD) is a progressive, inherited neurodegenerative disorder that impacts movement, thinking, and mood. Treatment is not handled by a single doctor but by a comprehensive, multidisciplinary team of medical and support specialists. This coordinated approach ensures that the complex and evolving symptoms of HD are managed effectively across the disease’s entire course.
The Central Role of the Neurologist
The neurologist, particularly one specializing in movement disorders, acts as the primary physician and team leader for an individual with Huntington’s disease. They are responsible for confirming the clinical diagnosis and continuously monitoring the disease’s progression over time. This medical specialist uses standardized tools, such as the Unified Huntington’s Disease Rating Scale (UHDRS), to track changes in motor function, cognition, and behavior.
A primary focus is the management of involuntary movements, most notably chorea, which presents as sudden, irregular jerking or twisting motions. The neurologist prescribes medications specifically designed to reduce this hyperkinetic symptom. These treatments include vesicular monoamine transporter 2 (VMAT2) inhibitors, such as tetrabenazine, deutetrabenazine, and valbenazine.
The neurologist also addresses other motor symptoms like dystonia and bradykinesia, which is slowness of movement. They coordinate referrals to other specialists for non-motor symptoms, maintaining a holistic view of the patient’s care plan.
Specialists for Physical and Motor Function
As motor control declines, a team of rehabilitation specialists steps in to help maintain mobility. The physical therapist (PT) develops exercise programs focused on improving strength, balance, and gait. These interventions aim to stabilize motor function and reduce the risk of falls.
The occupational therapist (OT) works to adapt the patient’s daily environment and routines to compensate for physical limitations. They recommend assistive devices and modifications to the home, such as changes to seating or the use of walkers, to enhance safety and ease of performing activities of daily living.
The speech-language pathologist (SLP) addresses two major issues that arise with HD: communication and swallowing difficulties, known as dysphagia. They provide strategies and exercises to maintain clear speech and safe oral intake. Safe swallowing is crucial since aspiration pneumonia is a frequent cause of death in advanced HD.
Care for Cognitive and Psychiatric Symptoms
Huntington’s disease is characterized by significant changes in behavior, mood, and thinking that often require specialized medical intervention. The psychiatrist is the medical doctor responsible for prescribing and managing medications for the wide range of psychiatric symptoms. These frequently include depression, anxiety, apathy, irritability, and, less commonly, psychosis.
They may use selective serotonin reuptake inhibitors (SSRIs) for depression and anxiety, or atypical antipsychotics like olanzapine or quetiapine to manage agitation, irritability, or psychotic episodes. The psychiatrist must carefully balance the benefits of these drugs against potential side effects, such as worsening the motor symptoms.
The neuropsychologist or psychologist plays a role in formally assessing cognitive decline and providing behavioral support. They perform detailed evaluations of memory, reasoning, and mental agility. They also offer behavioral therapy and coping strategies to both the patient and family members to manage emotional distress and difficult behaviors.
The Importance of Coordinated Support Services
Beyond the medical and rehabilitation specialists, a network of support professionals helps navigate the logistical and emotional challenges of HD. The social worker is essential for connecting families with necessary community resources, financial assistance, and long-term care planning. They assist with disability applications and finding suitable facilities as the disease progresses.
Genetic counselors provide guidance and support to family members who are at risk of inheriting the gene. They explain the implications of genetic testing and assist with reproductive planning decisions. Counseling is provided in a non-directive manner, allowing families to make informed personal choices.
Palliative care specialists focus on optimizing the patient’s quality of life and providing relief from the symptoms and stress of the illness. Their approach is holistic, managing physical discomfort, emotional distress, and spiritual needs from the time of diagnosis onward, not just in the final stages of life.