In 2019, originally residing in Texas, Caitlan Jane O’Heeron decided to move to Louisiana to help her grandparents take care of her mother 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 during their prime working years and has no cure.
In 2009, her mother started to experience more anxiety and divorced Caitlan’s stepfather.
"She did not want to leave the house and was let go of her job,” said Caitlan. “My mother was also an impulsive buyer and developed panic attacks before job interviews. My sister, Emma, and I would be punished for little things. I was grounded for three months for receiving a C on her test.”
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.
After Caitlan went to college, her mother started to experience cognitive symptoms and would go to several different doctors, but she received no answers. Her mother was depressed and tried to take her own life more than six times.
“We did not know how to help my mother and I started to resent her,” Caitlan explains.
At the time, Caitlan was living in Austin, Texas, and spent Christmas with her mother for the first time in five years. Caitlan’s grandparents were taking care of her mother.
In 2019, Caitlan decided to move to Louisiana to help take care of her mother alongside her grandparents.
“In Louisiana, a lot of doctors would dismiss her symptoms,” said Caitlan. “There was one psychiatrist who explained to us that HD would be obvious and it would be a waste of money to be tested for HD.”
She would meet with different physical therapists and was able to receive power of attorney for her mother. This is used in the event that someone cannot sign the necessary documents because of one’s temporary or permanent illness or disability.
Her mother would go on disability. Applying for disability benefits is a necessity for most HD families, but the disability process is often complicated and overwhelming, whether it is a Social Security disability or a private disability. To learn more, click here
“Part of the difficulty with the disability process is having to come to terms with applying for disability,” said Allison Bartlett, HDSA’s Senior Manager of Disability Programs. “There is always fear and concern about the difficulty of the process and how long it will take, but there is also sadness. No one wants to be forced to stop working because of an illness. Every client I have had has said they would keep working if they could. It is okay to be sad and frustrated, that is part of the disability process, but remember that Social Security disability is a benefit that you pay into. If you need SSDI because of an HD diagnosis, you have earned that benefit and no one should feel bad about taking it.”
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.
After more than eleven years of battling HD symptoms, her mother was officially diagnosed with HD in 2020.
"My mother was adopted as we would learn that both of her biological parents were diagnosed with HD,” Caitlan explains.
This also meant that Caitlan and Emma were now at risk. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.
HDSA Centers of Excellence provide a unique team approach to HD care and research. Patients benefit from a ‘one-stop shopping’ approach to access expert neurologists, psychiatrists, social workers, therapists, counselors, and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.
In 2021, her mother’s health started to worsen and she was having trouble swallowing. Her falls were more constant and she was placed in the hospital. The hospital would have her mother stay for a month until the family was able to find her a nursing home.
"Both of us were struggling emotionally, and financially, and in the last year she progressed into the last stage while I tried to help find her care,” said Caitlan. “She was denied admission by every nursing home facility in Louisiana over and over for a year, even with the help of Ms. Savoy and two other social workers. I fed her morning, noon, and night, and her swallowing issues became so severe, that she regurgitated just about everything she ate. Hospital visits were frequent due to terrifying falls from our house not being handicapped accessible, and we couldn’t afford to make proper renovations.”
Finally, on Caitlan’s birthday, her mother was placed in a nursing home as there was only one other patient with HD. Caitlan truly felt she got her mother back as she was in the nursing home.
“While we are grateful that she was finally accepted, it doesn’t take away from the constant stress, worry, sadness, and fear I held,” Caitlan explains. “We barely had help, and even if we were able to access help through hospice or home-health, physical therapists or hospice CNAs were only able to come a few times a week for maybe 30 minutes at a time.”
As for Caitlan, for the past three years, HD was hard to process. This has challenged her mental health. Caitlan decided to go to her first HD support group in Louisiana and attended the local Team Hope Walk event.
Support groups can offer vital emotional support, valuable advice about community-based resources as well as guidance from other group members about many of HD’s most challenging situations. To learn more, click here
Caitlan has a message for the HD Community:
“As I am navigating my own HD journey, I am trying to find peace in the little things."
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