To expand on my last blog, Hospice, Palliative Care and HDSA Have Similar Goals for Patients, today I’m sharing information on the Centers of Excellence (COE), 55 across our nation with 10 partner sites, funded by the nonprofit, Huntington’s Disease Society of America (HDSA). UCSF HD Clinic Stanford HD Clinic
HDSA doesn’t advertise their Centers of Excellence as palliative care, but it is palliative care; treating symptoms to improve quality of life and then connecting to community supports that are palliative (support groups, in home assistance, education events).
Huntington’s disease, a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimer’s simultaneously, has NO CURE and slowly progresses over 10-20 years.
I believe it is vital for Huntington’s disease families to connect with a Center of Excellence to address issues as a family’s HD journey changes. The interdisciplinary team at the COE has a discipline/medication for just about every symptoms that occurs in HD patients.
An example: People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.
To address swallowing issues a referral can be made to a speech therapist who can help the patient and family address it.