What to Expect at the Huntington's Disease Clinic
Our clinic uses an interdisciplinary approach to meet the needs of people with HD and their families. Patients undergo a comprehensive evaluation by a neurologist as well as assessments by physical therapy, occupational therapy, speech therapy, nutrition and social services on the day of their visit. An individualized plan is developed with recommendations for follow-up care, which may include referral of patient for services in their community. Visits can be long, sometimes 2.5 to 3 hours in order to provide patients with a comprehensive evaluation. We typically recommend follow-up appointments every six months.
A Physical Therapist helps patients in whatever stages of the disease they are. The only difference is the exercises they do. Physical therapy improves physical condition, health-related quality of life, strength, balance, and gait in people with basal ganglia (a type of neuron in the brain) disorder, such as HD. The physical changes someone has are: weakening of muscles in the back and the core that affect breathing and posture. With the weakness of muscles, people tend to lead a sedentary lifestyle which causes the person in an overall decline of health. The lack of movement, and weakness of muscles also has negative effects on the persons cognition and emotional health. At this stage of the disease a helpful plan would be a general fitness plan that can be done at home or at a local gym. Physical activity early in the disease helps to maintain physical function and reduce some of the stress that is associated with a catastrophic illness. Physical activity also helps to treat depression, a common disease associated with HD. This only helps with stabilizing a person’s symptoms, it does not alter the course of the disease. To create the right plan, the Physical Therapist does a few tests that will help them create the right plan for the person.
HD creates a complex combination of movement, cognitive and behavioral disabilities that will increase as the disease progresses. To be effective, programs to improve safety and mobility through occupational therapy must be presented in a manner that takes the cognitive and behavioral disabilities into consideration. An Occupational Therapist can help a person living with Huntington’s Disease participate in as many as possible important life activities and maintain the highest possible quality of life. Occupational Therapists work together with patients and their families to help them maintain the highest level of independence in daily living activities like grooming, dressing, eating, toileting and bathing, along with work, community and leisure tasks.
HDSA Social Workers are often the first voice that someone new to HD may hear. Social workers offer information, education and access to community based services within a specific region. They provide in-services to long term care facilities where persons with HD reside, assist with the disability application process, facilitate support groups, identify and develop relationships with the local medical community, maintain the local helpline as well as develop resources for HD families and healthcare professionals within their area.
A speech-language pathologist specializes in assessing and treating speech (dysarthria and apraxia) and language disorders (aphasia), impaired cognitive aspects of communication (e.g. Attention, memory, problem solving, executive functions), and swallowing disorders (dysphagia).
Support Our Work
Philanthropic support for the Mass General Huntington's Disease Unit is critical to patient care, research and education. Please consider a gift to support research and clinical care today.