I received an email from Julie Martini, a volunteer who works with clients with Huntington Disease (HD) in Canada. She had the following information about Huntington Disease that I thought you would find of interest:
Huntington Disease (HD) care is not only about dementia, but also includes:
serious emotial and behavioural changes ranging from temper to inappropriate sexual behaviour and patient's unawareness of disease. These evolve over time, so just when you think you have something figured out...
enormous nutritional requirements (as high as 8,000 calories per day) due to constant uncontrolled movement combined with sufferer's diminished ability to control swallowing and plan meals to meet their own needs
choking, succeptibility to aspirational pnenomia, etc.
caregiver isolation as a result of familial secrecy due to 50% heredity and huge potential for genetic discrimination
guilt or denial in those family members who have tested negative or who have not undergone genetic testing, leaving a smaller number of family members to help out
onset in 30's or 40's in a world focused on disability and dementia only in seniors (also a rare, accelerated juvenille version with onset as early as 2.) Reverse age discrimination resulting in placement denial. Or placement where the patient is the youngest by 20 years, leading to decreased quality of life.
frequent misdiagnosis or late diagnosis resulting in firing rather than disability insurance, adding financial worry
protecting from physical harm as a result of uncontrolled, jerky movements which result in bumps, bangs and falls
constant advocacy and/or explanation of HD which is not well known even by doctors and caregivers, let alone neighbours or potential donors. It is not unusual that every care facility a patient enters, they are the first HD patient. Treating it "just like Alzheimers" just doesn't work, but often facility staff don't listen until the initial placement has gone poorly.
multi-generational, multi-stage illnesses in same family. A patient or caregiver is often faced with late stage HD in the older generations and early/mid-stage HD in siblings or cousins. Where adoption or misdiagnosis of older generations has occurred, unsuspecting couples have their families before knowing that they themselves are at risk, resulting in another generation growing up under the cloud of a 50% risk of inheriting.
incredibly high patient suicide rate due to lack of treatment or cure, witnessing other family members experiences, long, slow progression of disease.
There is also:
a wonderful community of dedicated volunteers and families supporting each other
a novel framework for how research is being conducted and information being shared--nothing short of beautiful
amazing research which is aided by a single on/off gene, accurate animal models, etc. It is expected to contribute significantly to the knowledge base for Alzheimers, MS, stroke (brain repair), cancer (cell growth vs. cell death), etc.
Here are some links you may find interesting of useful: