Lindsay was a scared little girl and didn’t really understand what was going on with her grandfather. He would yell at his wife and he would fall more than once. Lindsay’s grandmother took care of him until he passed away in 1993 due to complications from 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.
The falling and anger from her grandfather were symptoms of HD. It can be described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. The symptoms also includes forgetfulness, impaired judgement, slurred speech, difficulty in swallowing, and significant weight loss.
“I was in the first grade, and I remember his funeral service,” Lindsay explains. “The smell of the flowers. The people there who came up to me and told me stories about him. How sad my Grandma was to have lost her best friend - I recognized it even then at that young age.”
During this time, Lindsay’s father, Philip, married her now step-mother Jody. Before having another child, her father wanted to test for HD. Each year, 5-10% of HD affected families are tested. 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.
Her father tested positive for HD. Then, his son was born.
“He was in his thirties, a newlywed, a soon-to-be father of the son he had always wanted to carry on our family name. He didn't handle it too well.”
Because Lindsay primarily lived with her mother, she did not see the initial changes that started to happen with her father. She also dealt with her mother who had Multiple Sclerosis as both parents would stop working by the time she was in the eighth grade. Looking back, Lindsay gave Jody a lot of credit for supporting Phillip through the hard times.
“I knew he always was hot-tempered but that grew with his depression after diagnosis,” Lindsay explains. “There was a lot of arguing in the house when I'd visit every other weekend and in the summer. I’m thankful that Jody was able to see past the disease most of the time and know that's not who he truly was. He was a semi-truck driver and we had to take away his driver's license as it was becoming increasingly scary having him behind the wheel. Taking away his license also meant he had to step away from his job which is never easy for anyone, let alone the head of the household.”
In the late 2000’s, Jody would lose her job in the middle of the financial crisis in the US. During this time, Lindsay was working towards her bachelor’s degree with the aspiration of one day becoming a nurse. After twenty-five years in the banking industry, Jody decided to go back to college to become a Licensed Practical Nurse (LPN). Both of them were not home long periods to properly take care of Philip which led to the family making a decision.
“We decided to place him into a nursing facility to ensure he was safely looked after while our family made this transition,” Lindsay explains. “He was a few months away from turning fifty-years-old and it was gut wrenching to think about that's where we would celebrate that milestone of a birthday. I didn't think that would be the last big birthday we'd celebrate, but as it turns out, it was. The conversation with him about what was happening will be one I'll never stop replaying in my head and it was, hands down, one of the most difficult things I've ever had to do in my life.”
Jody and Lindsay would begin their nursing careers and spent as much time with Philip as they possibly could. He was getting great care at a care facility in Woodstock, Ohio. “It was harder and harder to visit alone as he became less and less verbal and spent much of his time asleep,” said Lindsay. “He'd get bouts of pneumonia and we'd be fearful he was taking a turn for the worse, but always came through. I can't thank the staff enough for all they did for him and for us.”
Lindsay always feared that he would never see her get married. However, on December 13th 2014, he was able to go as this was the last time he ever stepped outside of the care facility. He did not make it through the entire ceremony but all that mattered was his presence.
“They got him all cleaned up, in a suit and tie, and drove him an hour each way to be there,” Lindsay explains. “They wouldn't accept payment, they all came in on their days off to help get him together for what was the biggest day of my life, and I'm forever in awe of the angels that brought me my father on my wedding day.”
On March 24th, 2015, her father passed away due to complications from HD. "He went peacefully with his family by his side, and that's all I could have asked for him was to know we were there and no matter what, he was loved. He was more than HD."
As for Lindsay, she wanted to be tested for the disease. She made her decision shortly after graduating nursing school but can now finally be tested because she had life insurance, a degree, job, and an excellent support system around her.
As part of her nursing requirements, she volunteered at the Ohio State University-Wexner Medical Center. 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.
Lindsay followed in her great-grandmother and grandmother’s footsteps in volunteering at the facility. “I think Dr. Sandra Kosyk and her team (shout out to my genetic counselor, Allison Seward, and now retired HDSA social worker/Angel on earth, Barb Heiman, for being with me every step of the way) were more nervous having known me for my entire life and doing my testing than I was to receive my results, one way or the other.”
The test came back negative.
“I didn't know how to feel, I definitely went through a period of serious survivor's guilt, but did nothing but look forward to what I could do to represent my family and friends who may not be so lucky to get the same card dealt as I had,” Lindsay explains.
The week after testing negative, she moved from Columbus to Cincinnati, Ohio. She would then find HDSA’s Ohio Valley Chapter and started to go to their events include the Team Hope Walks. The Team Hope Walk Program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. It has appeared in more than 100 different cities since its inception in 2007.
In 2017, she was a part of the New York City Marathon HDSA team. This year, she is expecting her first child that is due in September of 2019.
“Huntington's disease will always be a part of my life, even if it didn't find its way into my DNA, but it is very much a part of who I am and what I'm passionate about,” said Lindsay. “Until we have a cure or effective treatment, I will continue to fight with my friends and for my friends - and in memory of my favorite guy, My Daddy-o.”
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 (HDSA) 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 firstname.lastname@example.org.