Whether you are living with Huntington’s Chorea, caring for someone who is, or living at risk for Huntington’s, knowing where to turn for help can make a big difference. The Huntington’s Disease Advocacy Center has caregiver guides, stories by people with Huntington’s (check out the ones by Kelly B. for some insight into living with Huntington’s), nutrition tips and recipes and access to message boards and on line support groups.
Stanford University also has a great site, Huntington’s Outreach Project for Education, at Stanford, which serves as a complement to HDAC by concentrating on the scientific side and providing information about the current research on Huntington’s.
And while a health care proxy and living will are things that everyone should have, it is especially important for people with a progressive disease to appoint someone they trust to make decisions for them when they are no longer able, and to make sure that person knows what decisions should be made. In addition, a Durable Power of Attorney should be executed to provide for the management of property and finances in the event of incapacity.
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