All Posts In Stories

Chance

Today’s the day.     Time to flip the coin. That’s the metaphor that was first used to explain HD to me, and it’s deceptive. Supposedly, heads you live, tails you die — slowly and painfully. But I’ve flipped a hundred coins and the act is too simple to accurately describe what is happening. Any comfort […]

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After the Diagnosis

Before the diagnosis my husband would lose his temper at me.  He’d leave the house and I’d not know when he would return. He wouldn’t go to marriage counseling, so I did. What was I doing wrong? Then one day he lost his temper at our child. I’ll never forget that moment, and our child […]

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Caregivers: Get a Dog!

After noticing some unusual mental and physical behavior, appointments with and tests by a neurologist, we got the startling diagnosis of Huntington’s disease (HD) in March 2010. It was an unwelcome surprise as we were not aware that this genetic brain disease was in her father’s family. Katie’s reaction was, “I don’t want to know […]

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Maladies of My Mind – Ch.3 Drowning

Maladies of My Mind Chapter 3. Drowning The cold collar chafes my neck and makes the shivering hard to control. At least I am no longer in the claustrophobic tube, while the machines click and whir around me, listening to a disembodied voice telling me to hold still while I try to convince myself I […]

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Table of Contents: Maladies of My Mind

Disclaimer: Even though the image above depicts the monster holding a U.S. coin, Huntington’s disease affects families around the world. It is just not often talked about. Maladies of My Mind is inspired by interviews of Thai individuals affected by different mental illnesses, but it does not cover the entirety of a Huntington’s disease experience […]

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Graduation

It’s the first day of classes and I’m late. I’m running both towards and away from my destination, unable to nail down a sense of direction. Suddenly I arrive, unsure how I managed to find the room. The door swings open to reveal a huge lecture hall full of people. I trip on my way […]

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Symptomatic

I stand at the starting line alongside the other competitors, stretching and jogging in place, contemplating the race ahead. Just shy of six miles long, the course winds through the desert relentlessly, pulling runners further into the heat until every ounce of moisture is drawn from their bodies. This is easily one of the most […]

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The Bar Exam

I get an odd rush out of telling people how nervous I am about the Bar results coming in today. And it’s true, I suppose I’m somewhat antsy about them and it’ll be great to know officially. But I’m not actually worried: I do well on standardized tests. I studied for months and I felt […]

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NEW! Stories Section

HOPES is excited to present a new Stories section on the website! This section is meant to be an open space in which individuals affected by Huntington’s disease (patients, caregivers, and friends) can share their experiences with HD in the form of anonymous text excerpts. We believe the sharing of narrative can have healing qualities and […]

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