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By Matthew Santamaria (msantamaria@hdsa.org)

In 2004, Kerri Pounders’ father came home from work. He told his family that he could not remember how to do this job that he had been doing for more than twenty years.

At the time, her father was fifty-seven years old and served in the armed forces.

“My mom dismissed it because they had gotten new computers and he was having trouble learning how to use them. Then, not long after that, he just walked off his job. He did not come home until the next morning.”

According to Kerri, he went to the Mississippi River to take his own life but her father said an angel saved him. He would then drive a bunch of homeless people around for the rest of the night as her mother took him to the VA that day.

He was diagnosed with Pseudo Dementia that was brought on by depression. He visited the VA every month or so as his medication was changed each time. However, he was getting worse and not better.

“He tried several times to kill himself,” Kerri explains. “He went back to the bridge a couple of times. Once, he took an overdose of his medication. My younger sister had gotten a laptop for school, and he thought that she was programming his brain. He was paranoid. He thought his family was trying to poison him. He heard voices. He would become violent. He couldn’t carry on a conversation.”

Kerri is a Physical Therapist Assistant and has worked with patients with dementia and/or depression. She thought her father was misdiagnosed because she has never seen people with Psuedo Dementia act this way.

In 2010, the family traveled from Memphis, Tennessee to Jacksonville, Florida as the doctor determined rather quickly what was wrong. He got his blood work analyzed. As a few weeks passed, the test showed that he has the gene that causes Huntington’s disease (HD). This 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.

“After his diagnosis, we started seeing a doctor who specializes in the disease,” said Kerri. “It felt good to be able to talk to someone who understood the disease. My dad still had psychotic episodes. He would just take off and we wouldn’t know where he was. He totaled his truck and eventually totaled my mom’s car.”

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

Once her father tested positive, this led to her mother thinking of Kerri’s uncle. He was eleven years older than him and has experience issues with walking, talking, and swallowing. He tested positive for the gene that causes HD as well.

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.

Before his diagnosis, her father experienced signs of HD but it would soon progress.

”My mom was working part time, but when my dad left his job, she had to get a full time job,” Kerri explains. “He stayed at an adult day care center during the day because she had to work. He was admitted to several different psychiatric facilities over the years. The S.W.A.T. team was called to my parents’ house one time because my dad called the police and threatened to harm my sister.”

This type of behavior would soon decrease but HD started to affect him physically. He was having trouble walking as this resulted him in a wheelchair. For the last few years of this wife, Kerri thought he was acting more like himself. According to Kerri, every now and then the family would be talking and he would chime in saying something funny that would pertain to the conversation.

“I remember playing a game with our family where everyone was asked if they had a super power, what it would be. Everyone around the table wanted to be able to fly or have x-ray vision and he quietly said, “I wish I could walk.”

In 2012, Kerri’s uncle passed away at the age of seventy-six years old due to complications from HD. In February of 2014, at the age of sixty-six years old, her father passed away due to complications from HD.

“My mom and dad were married for forty-four years. Since he passed away, we all miss him dearly, but we lost him to HD far before he passed away.”

After her father passed away, Kerri decided to get tested for HD. She is the only child of her father to be tested. Her younger and older sister have not been tested as her three nephews are at risk.

The decision to get genetically tested is difficult people at-risk. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

Kerri tested positive for the gene that causes HD at the age of forty-four years old. She has three children at risk.

“I attend Huntington’s disease support group meetings, fundraising events, and am willing to do any study that will accept me. I pray everyday to find a cure for HD.”

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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