Huntington’s: Andre’s family talks about many things, except the one thing they all might share

by Andres Aguilera

A photo of a man with a zipper for lips. The zipper is half closed. Image portrays keeping silence. A family has huntington's disease but they won't talk about it.
Caption:

It was the silent unspoken curse that haunted our family. No one wanted to talk about it.

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©Daylight Photo

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Every family has great and not-so-great things running through their DNA. In mine, the great includes fast metabolism, strong teeth, and thick hair. On the other hand, some of the not-so-great are skin issues, high blood pressure, and the most affecting one for my family: Huntington’s Disease. My family has Huntington’s Disease, a genetic disorder that affects the brain cells and damages the mental and physical abilities of those who have it.

Huntington’s Disease is also known as Huntington’s chorea because of the involuntary movements it causes, which leads to comparisons with Parkinson’s disease (PD). Early symptoms include forgetfulness and difficulty to focus, so in some ways, it is similar to Alzheimer’s disease. Huntington’s Disease is hereditary, so anyone with an affected parent has a 50-50 chance of getting it. In the past, there were rumors women were more likely to develop Huntington’s Disease, but I think recent research shows men have the same chances of getting it.



Huntington’s Disease: There is no cure.

When it comes to my family, my first memories of Huntington’s Disease revolve around my grandmother María, who was my mother’s mom. She was a lovely lady who gave birth to ten kids, was a great cook and would always have ample hugs for her sons, daughters, and grandkids.

Sadly, Huntington’s Disease ran in her DNA, and both she and one of her sisters, who I didn’t get to know that much, inherited the disease. I was too young to remember when she started to show symptoms of Huntington’s Disease. Her behavior during the last and most critical stages of the disease was one of the few memories I have of her.

I have memories of María walking around the house that she and my grandfather, Juan, had shared for years. I can still see her shaky moves; still, hear her asking me the same questions over and over again. On good days, she would repeat, several times, the story of how she and grandpa met, and how they built the house from the ground up.


On bad days, she would have these horrible mood changes, raising her voice at different members of the family, cursing, or forgetting who she was talking to. A young teenager at the time, I recall feeling so uncomfortable (and frankly, annoyed) whenever she would scream at my mom. I couldn’t understand how my grandma could act like two completely different persons, like Dr.Jekyll and Mr. Hyde, even when medicated, even on the same day.

As time went on, she kept losing weight, despite her insatiable appetite. Her mood swings became more drastic and increased in frequency. It took some research for me to understand what she was dealing with because my family didn’t talk about it much with us younger ones.

As I learned more about the disease, I felt selfish and immature. Although I tried my best to make amends, I just didn’t have the patience. I would sit next to her, listening to whatever she had to say. I held her unsteady hand and told her I loved her. Sadly, I didn’t get as much time with her as I would have liked. I moved to a different city when I was a junior in high school, and to another one, when I started college.



Huntington’s Disease: A midnight call.

At the end of August in my first year at college, my aunt called me in the middle of the night. I knew it wasn’t good news. She told me that my grandma past away after experiencing complications with the levels of sugar in her blood. I had to travel home next morning to attend her funeral. She was the first person I knew in my family to die. I hadn’t lost anyone dear to me before, and I didn’t feel like I had enough time to process it. I was in shock; wanting to cry; but for some reason, I couldn’t. Even today, I still don’t know why.

You would have thought that after my grandma died my family would be more open to discussing Huntington’s Disease, and the possibilities of any of us having it. But no, that wasn’t the case. It was the silent unspoken curse that haunted our family. It was as if we were too scared to find out whether we would have it in the future or not, so we just swept it under the rug, and kept ourselves as busy as possible.

However, Huntington’s Disease had different plans and others members of the family, as my uncle’s wife pointed out, started to show symptoms. The first one was my aunt, Mary. At 43, she began to lose control of the movement in her hands, eyebrows, and legs. For some reason, the disease developed faster on the physical side, regardless of medication and help, but fortunately, she remains mentally well.


My family has Huntington’s disease: I see it everywhere.

After aunt Mary was diagnosed, I did my research and started looking for symptoms in my other uncles and aunts actions, as well as my brothers, cousins, and even myself. I am not a doctor, but I noticed early symptoms on very the last person I expected to find them: my mom. I knew there was a chance she could have Huntington’s Disease, But she is my mom. My mom doesn’t get sick.

I saw the beginnings of the all too familiar involuntary movements in her eyebrows, legs, and hands. How could I possibly tell her that she may have Huntington’s Disease without alarming her? Was it even my role as her son to say anything? The disease’s evolution of aunt Mary had been so fast up to that point I knew she wouldn’t handle it well.

I still need to learn more about my mother’s relationship with Huntington’s Disease. Surely she must know, but like the rest of my family is she too afraid to admit what is happening. What are we all afraid of? The truth?


Article by Andres Aguilera

Andres Aguilera is a writer, social media manager and Karaoke aficionado from Venezuela.

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