Neuroscience: HD Research and Treatment

“I think I’m starting to get a much better understanding of the disease now,” Amanda says. “But I’m still not sure what this means for Uncle Gerald. If there’s no cure, what can we do for him?”

“We’ve talked a little in some of my classes about basic palliative care,” Michelle offers. “There are some relatively predictable stages of the disease that you can expect to see. At first, things probably won’t be so bad, and your uncle can continue with his usual life and work. For some patients, the psychological strain— knowing what’s coming and not being able to change it—may be the hardest part. It may help your family to talk to a patient advocacy organization or a support group for caregivers to get a sense of what kinds of choices other families have made.”

Questions:

. What are the basic stages of disease progression in HD? What types of symptoms are likely to require Uncle Gerald to need some degree of professional care?

. What are some specific organizations or resources (websites, etc.) that might be helpful to Amanda’s family in caring for Uncle Gerald?