Connect with our local chapter:
By Matthew Santamaria (msantamaria@hdsa.org)

As a young child, Vanessa Yang knew her mother was different compared to other moms.

Her mother was battling Huntington’s disease (HD).

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

When Vanessa was born, her mother was diagnosed with the gene that causes HD as the symptoms started to progress. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

“It started with my mom having a weird walk,” Vanessa explains. “As a kid, I didn't understand why my mom walked so differently than others. By the end of grade school, my mom decided it was not safe to drive and she was very courageous in making that conscience decision on her on will. She fought very hard to hold onto whatever strength she had left in her legs. She walked for hours outside and inside, no matter how many times she fell down. Eventually, she lost ability to walk all together.”

When she was fourteen-years-old, she was awakened from her mother’s screaming. As this is happening, Vanessa was scared to leave her room to help her. Vanessa’s mother was scared of rats. She was hallucinating that she had rats all over the room. Her mother was rolling around the room to get the rats off her.

“My brothers and dad came out and all three of them grab her and left,” Vanessa explains. “They were headed to the local medical center and she stayed in the psychology department while she was there. They restrained her and kept her there for a week to test her medication so this wouldn't happen again. I visited her a few times while she was there and she was always so happy to see me.”

Her mother was determined to get better so she can return home with her family. The doctor gave the family good news. She only had to stay one more night and if the night went well then she can go home the next day.

However, this was not the case.

“My family and I were eager to pick her up,” Vanessa explains. “When we got to the hospital, the doctor had told us she had another hallucination during the night. This was when the doctor highly recommended putting her in a nursing home and not taking her home where it could trigger more hallucinations. Hearing that, I remember my heart sank and I remember my mom was so defeated she didn't want to talk to anyone. So, we end up placing her in a nursing home and at this point, my mom stayed quiet. She didn't want to go there. She didn't belong there. We all knew it, but it was for her best. Once we put my mom into a nursing home, that's when I learned my mom's disease had a name.”

According to Vanessa, she comes from a family that does not communicate feelings or tough situations. The family kept their feelings to themselves.

Her mother continued to decline as her attitude started to change in the nursing home. She was working diligently to eat her food and drink her thick water. Her mother started to practice with a speech therapist as her words were slurring, difficult to put together a sentence. The family would have to guess what she was saying as she would start saying one word a time or nod her head yes or no.

By sixteen-years-old, Vanessa finally started to open up about her mental health and started with a few friends. It was a long road of mental healing for her.

“At this point, I put a mask on at school and for all extracurricular activities,” said Vanessa. “I stayed quiet and did not tell anyone about my mom or my family situation. I didn't know how and all of this just ate me up inside. It tore me apart keeping all of this in.”

By eighteen-years-old, her mother is on a lot of medication to keep her still. Vanessa’s main concern was taking care of her mother.

“My focus was my mom,” Vanessa explains. “She was my priority. I didn't spend time thinking about my life, what I wanted to go for college, or even my career. I always thought I would just take care of my mom for as long as she needed me. I didn't need to think about other unrealistic things at the time. I continued to keep a lot of what was going up building up inside of me and I was struggling even more. It just didn't stop. I didn't know how I could be helped.”

When you are twenty-one-years-old, it is a very exciting time for young people as you are finally legal to drink and go to bars. However, that wasn’t Vanessa’s main priority.

“Twenty-one does not remind me of that. At twenty-one years of age, I had been watching my mom and experiencing her journey with HD.”

In 2015, the year just got underway and her mother had pneumonia. She had this for more than ten days and the family was worried because her body was too week to fight this. This to a choice for which if she would be put on a feeding tube her not. Vanessa voted no.

“Somehow, my mom managed to fight through this. It was a relief and we didn't have to put her on hospice care.”

Her health would worsen as she started to develop bed sores while battling pneumonia which left her in a lot of pain. She was forced to have hospice care.

“We knew how painful bed sores are and we didn't want to add more suffering that she wasn't used to handling already,” said Vanessa. “She managed to fight through the bed sores. Without a doubt in my mind, my mom is a fighter. I never thought anything would happen to her because she's been positive and resilient this entire journey.”

Her mother continued to fight but it was a battle that she could not win. A few months later, her mother became weaker and her muscles would not let her swallow food or liquids. She would pass away.

As for Vanessa, it was time to focus on herself. She wanted to learn to love herself and building herself up in a positive way. She started to go to a gym and attended graduate school to prove to herself that he is capable of this challenge. With hard work and determination, anything is possible.

Through it all, Vanessa will never forget her mother and the HD journey that led her here.

“Losing my mom will be the greatest heartbreak and pain. Experiencing her life, her love, and her death has changed my perspective forever. Learning how to grieve has been a powerful tool to my mental health. Today, I am still the same, but different. I see things differently and I feel all of the emotions to the extreme. Totally awesome. It hasn't been easy one bit. I've been taking it on a day at a day and being aware of where I am.”

###

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.