The many faces of HD

HD Negative

My story with Huntington’s Disease started almost thirty years ago, when my mother was diagnosed. From teenager to this day, I have witnessed the many faces of HD. I’ve seen my mother lose her ability to do tasks she used to master and slowly fade away in a nursing home. I’ve watched my sister suffer from several psychosis, having severe delusions and rapidly decline until she passed away on my birthday. My other two siblings are in middle stages of the disease.
Except for my mother, everyone in my family have been completely unaware of their illnesses (anosognosia), which has made it very difficult and frustrating to help them. I have noticed the onset of cognitive and psychiatric symptoms years before the onset of motor symptoms. I’ve been the one who’s had to bring up the illness when they didn’t want to hear anything about it. All my attempts to help them get early support and therapies, have backfired on me. Read more…

HD Positive

Nancy, Germany

At-risk

Living at Risk

Meg, United States of America

In life, we are all at-risk for something in life, one way or another. Risk of heart failure if you have a poor diet, or don’t exercise. Risk of alcoholism if you drink too much, even only on the weekends. Risk of losing your job if you don’t do you work properly, or do your responsibilities. It seems like all of these risks happen because of the choices we do or don’t make in our journey. My “at-risk” though is a different, because I don’t have a choice, and it’s not something I can change or modify. I have a 50/50% chance of developing a fatal, neuro-degenerative brain disease called Huntington’s Disease. In other words, a disease that kills your brain cells over time, leading to a variety of symptoms, such as unsteady walking, inability to speak, memory loss, swallowing issues, mood swings, impaired judgment, etc. Read more…

Caregiver

For many years we lived with our backs to Huntington’s disease.

Until the first movements and character changes began.

I didn’t think about becoming a caregiver, but that’s the reality of life.

Life plans were transformed.

The disease progressed and more and more care was needed.