“Can they tell by looking at me how useless and weak and flimsy and [artificial] (and how foney) I feel?” — notes from Woody Guthrie, dated Aug. 21, 1952 Woody Guthrie was an American singer-songwriter and visual artist who was born in 1912 in Oklahoma. Though he inherited…
“And my mother … that was a little too much for her nerves, her something.” This comment, made in 1940, was the first time American singer-songwriter Woody Guthrie had publicly alluded to his mother’s Huntington’s disease. Guthrie was born on July 14, 1912, in Okemah, Oklahoma,…
As an advocate and columnist for Huntington’s Disease News, I was excited to be chosen as a moderator for this site’s Community Spotlight. The initiative will highlight personal stories and raise awareness throughout May in honor of Huntington’s Disease Awareness Month. My role involved finding other people…
Imagine what a world without Huntington’s disease (HD) would look like if a cure were found. It would be a world free from the suffering caused by symptoms like chorea and cognitive, emotional, and behavioral changes. There would be no more swallowing difficulties, weight loss, or pneumonia…
Some of my closest friends are musicians who love the work of Bob Dylan. During a recent conversation, Dylan’s visit with ailing singer-songwriter Woody Guthrie came up. My friends hadn’t realized that Guthrie had Huntington’s disease — which they knew as the same…
Psychosis causes a person to lose a degree of contact with reality. According to the National Health Service, three main symptoms are linked to a psychotic episode: hallucinations, delusions, and confused and disturbed thoughts. As a 2019 Huntington’s Disease News article noted, “Psychosis is defined as experiencing hallucinations…
Huntington’s disease, a neurodegenerative disorder, has affected several generations of my family. So far, it’s taken the lives of my dad, grandad, and great-grandmother. I tested negative for Huntington’s disease in the summer of 2023. In the early stages of my dad’s disease, my friends and I…
The United Kingdom’s Mental Capacity Act, introduced in 2005, states that a person is unable to make a decision if they cannot do one or more of the following: “Understand the information relevant to the decision “Retain that information for long enough to make the decision “Use or weigh…
“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” — Stephen Hawking Huntington’s disease affected both my dad’s and my brother Gavin’s…
“The waste of money cures itself, for soon there is no more waste.” – M.W. Harrison The cognitive damage caused by Huntington’s disease has strongly affected my brother, Gavin. It’s part of the reason he is unable to manage his financial affairs on his own. We saw…
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