The good news is there is always something that can be done to help treat the symptoms of Huntington’s disease. Today, HD is not a curable disease. Effective strategies can help modify or slow the disease course, manage symptoms, improve function and safety, and address emotional health.
Because HD is not a common disease in the general population, many medical professionals don’t have experience treating HD patients. It’s important to find professionals that are knowledgeable about HD and with whom you respect and feel comfortable. Having a good relationship with members of your care team is important for both the person with HD and the ones who are caring for them. Your relationships should always include trust, open communication and willingness to mutually set goals and treatment strategies.
Involving a team of healthcare professionals, each with expertise in managing different aspects of the disease and the symptoms it can cause, will improve independence, health, and well-being. Sometimes teams of professionals caring for people with HD work within a medical center. If you don’t have access to a Center specializing in HD, a team can be made by finding specialists in your area.
Your HD Team
A knowledgeable team can prescribe symptom modifying medications to decrease behavior and movement challenges. Partnering with these specialists allows the person with HD and their caregivers feel safer and live better. An ideal team would include the following:
- Psychiatrist or neuropsychiatrist
- Speech therapist
- Occupational therapist
- Physical therapist
- Primary care physician
- Mental health therapist
HD Reach can work with you to find a Center of HD Care or individual doctors and therapists who will be your team.
Like the general population, you may have medical problems not related to HD. Regular visits with primary care doctors and routine dental care are important for preventing other diseases. Getting the Covid-19 vaccine and other age-appropriate vaccines will help keep you safe and healthy. The same goes for family members – their health and well-being are also a priority.
The impacts of HD are felt throughout a family. Family members may have HD, may be at-risk for HD and may be caring for family with HD. Anyone affected by HD is welcome to contact HD Reach to receive guidance and information on getting care for themselves and those they care about. Comprehensive care includes attention to the emotional health of the person with HD and everyone who cares for him or her. HD Reach provides Therapy Path, confidential teletherapy provided by a licensed therapist with over 30 years experience working with HD families. HD Reach can also help you find other therapists who meet your needs.