By Matthew Santamaria (firstname.lastname@example.org)
In 1951, Robert Rangel was born in Los Angeles, California.
In 1965, his mother was not acting right. She went to a series of doctors and did not know what was wrong with her. In 1966, his mother was officially diagnosed with 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.
On that same day, he was told that a grandfather that he looked up to was not his biological grandfather. His grandmother remarried and his actual grandfather passed away in a mental hospital because of complications from an undiagnosed Huntington’s disease. His grandmother did not tell his family this for more than a decade and it was the stigma to the mental health issue that kept her silent.
“Once my mom was diagnosed, I went to the school library, which I worked in one period a day,” said Robert. “There wasn’t much information available."
Recently, he was researching his family’s genealogy and found answers.
“I was able to find a record of my grandfather’s death at Patton State Hospital,” said Robert. “They declared his death was due to dementia. He brought HD with him when he emigrated from Mexico. I have no history of his family though.”
Now, back to the 1960’s, not much was still known about the disease but one fact stood out to Robert. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.
“That changed a lot of how the three of us looked at life, short and long term.”
As the years went on, his mother’s 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, depression, impaired judgement, involuntary movements, slurred speech, significant weight loss, and difficulty in swallowing.
His father could no longer care for her.
“I remember the day I came home from college to have “that talk” with my mom,” Robert explains. “Trying to explain to her that she was going to go into long-term convalescent care was one of the hardest things I ever had to do. My dad had asked me to be the bearer of bad news because I was working in an adolescent residential care facility at the time, and knew more than the rest of the family about those kinds of places.”
She would move from place to place as each facility was overwhelmed because of her symptoms. At the time, according to Robert, facilities did not understand HD or how to treat it.
“Each place she moved to was progressively worse than the one before in terms of standards and care,” said Robert. “Some of them got so frustrated with her that they simply overmedicated her, or restrained her to her bed. It was difficult seeing her slip away one long year at a time. Finally, after fifteen years of the disease progressing, my mom passed away in her sleep.”
The family battle with HD continued. Robert’s sister and uncle passed away due to complications from the disease. His uncle had six children and one of them also passed away.
“He had served in the Army for many years, but somehow, the VA did not help him,” said Robert. “He had a daughter at one point, who is also at risk.”
Two of his daughters are currently in the HD progression as they are being cared for by in home family members. One was never married but the other has two grown sons.
Robert’s brother tested negative for the disease and he was very active with HDSA’s Los Angeles Chapter. He is married with two sons.
“I never got directly tested, but had it done through a long-term HD research project at the University of Indiana,” said Robert. “My brother also participated in that project.” Robert and his wife adopted two children due to pregnancy issues and not due to HD concerns. In 2016, he moved to Boise, Idaho and has connected with HDSA’s Southern Idaho Affiliate. He has appeared at the annual Team Hope Walk
, HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease.
“Through that participation, we found out a friend here has HD in their family,” said Robert. “We have been able to come alongside them and even convinced them to attend the HDSA convention in Los Angeles. My posts on Facebook also connected me with the wife of a long time California friend, who has HD running in their family.”
He has a message for the HD community:
“You are not alone. Educate yourself about HD and become an advocate for your loved one’s treatment and care. Sadly, there are still medical professionals who don’t know much about HD. Help to raise funds. HD has been the stepchild of degenerative disease research funding for way too long.”
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 email@example.com.