By Matthew Santamaria (firstname.lastname@example.org)
San Diego native Mindy Schroeder has become stronger for overcoming the obstacles in her life.
Mindy has two brothers (Ron and Tim) and had one sister (April). They lived on a cul-de-sac in Oceanside, California. The family grew up in a middle income neighborhood. At the age of 15 years old, April died of a blood clot as a complication of her disease called Prader-Willi syndrome. This is a genetic disorder that causes obesity, intellectual disability, and shortness in height.
The family had already suffered one heartbreak with April but nothing could compare to what was going to happen next.
The three children are all grown up, graduated college, and moved out of the house. When Mindy would visit, she noticed that her father was fidgeting and jerking around. According to Mindy, he could never hold a newspaper.
“After a few years of him moving around, he started seeing a neurologist who said that he had a movement disorder and started him on some medication,” said Mindy. “He never diagnosed the movement disorder and I’m not sure why he didn’t try. So for years we knew my dad had something, but there was no name for it or no understanding of it.”
Then, one year on Thanksgiving, the evening was very usual for the family. This would change after her grandmother’s boyfriend made some rude comments. He went from the sweet, kind, and funny dad into a fit of rage. That night, Mindy would go back home to Los Angeles. Her mother knocked on the door a half hour later.
“She had jumped in the car after I had left and decided to come stay with me because she did not want to be around my dad,” said Mindy. “My mother didn’t like the way he was behaving and she needed to think. She stayed with me for several days while she contemplated leaving him. In the end, she went back and moved on from the incident. However, it left everyone feeling unsettled.”
Her father’s movements were starting to get worse and he had trouble getting out of bed. At the time, Mindy was working for a charity that was helping people with health issues and called their San Diego office to find out the best neurologist. After three doctors, it was clear that her father had Huntington’s disease (HD). He was the first person in the family to be diagnosed with the disease. The family thinks his mother had it but she was never diagnosed.
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.
Her brothers took the news okay but clearly were not happy about it. “My Mom, in her normal take charge get it done sort of way, felt relieved that she knew what it was and could begin doing the things that people do for people with HD,” said Mindy. “I went into a downward spiral of depression that literally took years to pull myself out of.”
Mindy knew that each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. She wanted to immediately be tested for the disease once she researched more about the disease.
“From that moment on, until my dad passed away five years later, my depression and anxiety overtook my life,” Mindy explains. “I couldn’t sleep at night. I cried constantly. Every evening for the first six months after the diagnosis, I got drunk. I didn’t think I was that person. I thought I was strong, and I thought I would never rely on alcohol. And I was ashamed of myself. I was caught in this loop of feeling pain, using alcohol to mask, feeling shame, hiding it all, and the drinking more to try to mask it.”
Her brothers did not want to be tested but Mindy needed to know the truth as she made this decision without the knowledge of her family as six months of therapy helped her make the choice.
“If I tested positive, I wouldn’t share the news until after my dad was gone and only when symptoms started,” said Mindy. “If I tested negative, I would drive home and tell everyone in person so that I could see my dad’s reaction to knowing that I didn’t have it.”
She tested negative.
“I know it probably sounds weird, but I cried. I cried tears of relief,” said Mindy. “I cried and cried. Afterwards, my friend and I went to the beach, were I cried some more, and talked about how the fact that I was given this gift would be my reminder to be grateful. And it also meant that I needed to give back.”
Mindy did not want to forget about the disease. She wanted to give back and made the decision to move back home. She wanted to be there for her entire family through these difficult times.
“I loved my life in LA,” Mindy explains. “By this time I was barely 30 years old, I had so much fun in my world, and I didn’t want to leave it. I felt that by leaving LA, I was also leaving that part of my life that was the “young” part of my life. But, I loved my dad more than I can explain. (I feel the same way about my Mom and all of my family). I needed to be there for all of them - to help her to care for him, and so we call all support each other.”
For the next few years, her father’ health was severely declining.
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, difficulty in swallowing, and significant weight loss.
Before her father passed away, his brother came to say goodbye. By this time, he hasn’t spoken for six months but said I love you to his brother. Those were the last words that Mindy heard her father say.
Mindy would see her father slowly pass away.
“It was a very hard thing to be a part of,” said Mindy. “I had to let him go, and I really fought letting him go. Those years of caring for my dad are ones that I will never regret, even though it was the hardest thing I’ve ever done. I was so connected to him, that when he was no longer there I felt his absence tugging at me. It took a long time to be okay again.”
Unfortunately, soon after her father passed away, Tim started to show symptoms of HD. The family suspected that he had the disease because Tim could not sit still. He started to get really angry, very depressed, and struggled to play the guitar cleanly.
Jody of the University of California, San Diego Health
, convinced him to get tested for the disease. This is one of the 47 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program. He tested positive.
“In the past year, he's really struggled with walking, he can't navigate crowds because his brain processes the information too slowly (and he gets scared), he can barely play his guitar, he has very noticeable uncontrolled movements, and he is embarrassed to be seen in public.”
Mindy has run eight half marathons for HDSA. She runs in the San Diego Marathon and calls it runner’s run.
“Every year before this event, I get nervous,” Mindy explains. “I'm not nervous about running, I'm nervous about sleeping. It's terrible to have to run after a night of no sleep. And so I worry that I won't. It's vicious because the worrying leads to not sleeping. And in the end, it becomes a self-fulfilling prophecy.”
Mindy now works at San Diego Health in the Engineering Department. She has become heavily involved in HDSA’s San Diego’s Chapter events.
“I’ve been to several HDSA conventions, and have connected with people both locally and throughout the country from HD families or who just care. And it’s opened up my world to the possibility of hope
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.