Do you know anyone with Huntington’s disease? If so who?
My Father died from Huntington’s
Disease on Christmas morning, 2008.
My cousin Tonya died from Huntington’s Disease about six months
after. My uncle was diagnosed with
Huntington’s Disease, but chose to take his own life just before Thanksgiving
1985 (I was just a baby!) Everyone
else in my family that has had it has passed away before I was born. Currently, my brother and myself as
well as three cousins are living at risk and are untested. I have also met many people with
Huntington’s Disease as a result of my advocacy work and fundraising projects!
When people have Huntington’s Disease, what limitations do
people have?
HD is different for everyone, in
my experience. My father struggled
more with the psychological effects, and was often violent and paranoid. At first they thought he might be
schizophrenic and was given anti-psychotics before they diagnosed him with HD. He became very depressed and his
alcoholism spun out of control.
The HD seemed to make his existing depression and anxiety 10x
worse. My cousin Tonya very much
suffered the physical effects (chorea).
She was arrested multiple times for public drunkenness, having never
drank in her life. It was very
embarrassing for her that she couldn’t walk straight and slurred when she
talked. She couldn’t work, and was
homeless for some time before she was committed to a nursing home.
That said, I was in DC for some
outreach work, and I met a man in his early 60’s with HD. I could tell that he had it, but it was
so obvious that he was receiving the best treatment possible. He had mild chorea, and had to speak
very slowly, but seemed to have a really good grip on the disease!
With the disease, what is everyday life like?
I can’t speak to what its like
to actually have the disease and daily life, but living with someone with HD is
incredibly destructive. I often
found myself being a parent to my father who became a shut in. He refused to leave the house, was
extremely fearful of being watched, and would not take his medicine. As a teenager, it prevented me from
having a normal life, and forced me to grow up before my time. He would
constantly drop lit cigerettes, resulting in small fires. It was terrifying to imagine him home
alone and setting the house on fire.
It was impossible to keep his nutrition up, and when he passed away, he
probably weighed 75 lbs.
What is it like personally knowing someone with this Disease?
How does it affect you?
Being around someone with HD is
devastating. It is very difficult
to watch someone deteriorate day after day, and slowly lose their ability to
take care of them self. It is
debilitating for the person, and absolutely traumatic for everyone around
them. I have HD nightmare at least
once a week.
With Huntington Disease, what is the quality of life like?
The quality of life varies so
much for HD patients. I have seen
people with the resources to get the best treatment available. It’s still debilitating, but with proper
care, they can at least live out their final days with dignity. Sadly that is usually not the
case. My experience has been the
HD is incredibly destructive, exhausting, and expensive. Proper care is hard to find, and out of
reach for the average person. Lack
of awareness leads to judgment and stereotyping. A person with HD can’t just walk down the street without
being stared at with looks of fear and disgust. They can’t drive, they can’t cut their food, they can’t tie
their shoes, and are completely dependent on other people to care for
them. A life with HD is generally
no life at all.
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