EP 65 :: Huntington’s Disease :: Karen Truman
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Bobbi and Mike talk with Dr. Karen Truman about Huntington’s disease, dementia, and finding resources for your caregiving journey.
Dr. Karen (Karle) Truman, founder of Dementia Caregiver Resources and author of the Dementia Caregiver’s Little Book of Hope talks about Huntington’s disease and finding resources for the caregiving journey.
Karen saw her own beloved mother, grandmother, and other relatives stricken with dementia but did not know what type they had.
“When people talk about the difference between Alzheimer's and dementia, I tell them that saying you have dementia is like saying that you have a brain disease. You need to find out exactly what kind of disease you have so you know exactly how to fight it and what you might be passing along to your children,” Bobbi says.
“Huntington's is inherited, so if one parent has it, their children have a 50% chance of inheriting it,” Karen explains. “There's a lot of emotional pain associated with it - it is a wasting away basically of the body.”
“I had my mother’s brain autopsied and it was one of the best gifts I could have ever given to myself because now I know exactly what she had, I know it was just Alzheimer's,” Karen explains.
The Brain Bank collects brain and tissue samples from across the United States and distributes them to investigators all over the world. A brain donation is a gift of knowledge to all of us, and it is of critical importance for our understanding of brain disorders,
You can find out more about Karen on her website as well as purchase her book.
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