NOTE: The following story features someone who was willing to courageously share their story, but remain anonymous. This also discusses the topic of suicide. If you are feeling suicidal or have suicidal thoughts, visit the National Suicide Prevention Lifeline or call 988.
“Marie” learned about Huntington’s disease (HD) early on in her relationship with “DJ”.
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 during their prime working years and has no cure.
“DJ” was only a teenager when he noticed the changes in his mother. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
According to “Marie”, his mother would be mean to his father as her stress increased when they took vacations. His grandmother was previously placed in an asylum for her progressive symptoms. His mother did not want anyone to see her symptoms progressing. When “Marie” and “DJ” were dating, his mother took her own life.
Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. “DJ” had an older sibling who tested positive for HD as the children are at risk.
As for “DJ”, he was a marathon runner including the New York City Marathon. He would also start a business with “Marie”. However, he could not handle the stress and would display violent and verbal outbursts as well as his anxiety worsening.
“Perception in their world is not reality,” said “Marie”. “When you are young, you don’t think that HD will affect you right away.”
“DJ” would then be tested for HD. The decision to get genetically tested is difficult to make. 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.
“DJ” tested positive as his symptoms worsen. He was an alcoholic and was self-medicating himself. “Marie” would be his caregiver for a while. She would read HD-related news and share as much as she could with him.
However, their relationship diminished and they separated. She wants to relate to others in her position and know that she is not alone.
“Marie” has a message for the HD Community:
“As a caregiver, it is important to talk to other caregivers to show you are not alone. Go to support groups. When you are with an individual with HD symptoms, remember that it is their perception of you and not who you are. That keeps you up at night.”
Huntington’s disease (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 during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD 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.
HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.
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 firstname.lastname@example.org