By Matthew Santamaria (firstname.lastname@example.org)
For those who have grandparents in your life, you are lucky. There are some people in this world that have never met their grandparents and don’t know the family history. Always treasure the time you have with your grandparents because you don’t know when that is going to end.
For Ohio native Courtney Scott, she is taking advantage of every chance she gets to see her grandmother. “My grandma was always there,” Courtney explains. “Anything that happened in our lives, she was there to witness it and take pictures of it. She kept everything that you made for her and she cherished it like someone just handed her a million dollars.”
She was a nurse and always attended church. According to Courtney, she made you feel loved and always had your best interest at heart. She continues to inspire Courtney everyday to be loving, kind, tender, and empathetic. These are only a few words to describe a great person.
She has been blessed to be married for over 51 years. The power of love is shown everyday between her grandfather and grandmother. Through sickness and health, her grandfather would always be there for her. “My grandpa shows grandma the most unconditional love that I have ever seen.”
In 2007, life would change drastically for the couple as Courtney’s grandmother was 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 during their prime working years and has no cure.
“Before Grandma got sick, my family and I had no idea what this disease was,” said Courtney. “At the time, I was only 12 years old, so I don’t think that my siblings and I were able to fully comprehend what was going on. Also, my grandpa had no knowledge of the disease. We knew it was serious and we knew grandma was sick- but we didn’t know the extent.”
Once hearing about the diagnosis, the family did more research about the disease. They would soon find out that this would affect the entire family. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. For at risk patients, 5-10% get gene tested.
“This is not an easy disease to witness and the harder part is knowing that my dad or my uncles could have it,” Courtney explains. “In turn, I could have this disease, or my sisters and brother or cousins could have this disease. Essentially anyone in my immediate family blood line could have this disease and that is the scariest part for me- the unknown.”
As the disease progressed, her grandmother started to show more symptoms of the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. According to Courtney, she remembers when her grandmother could not do simple things including walking on her own, brushing her teeth, or writing something down.
As time went on, she needed to go to a nursing home. She would have to start eating everything in liquid form and was unable to walk. This was tough for Courtney to see.
“I remember when she had to get a new bed to sleep in because the one that she had no longer met her specific needs,” said Courtney. “I remember seeing pads around my grandmas’ bed because her movements became so rapid that she was hurting herself by hitting the walls.”
Through it all, her grandfather was always by her side. “The love that my grandpa has shown my grandma throughout the duration of her disease has made all the difference.”
The doctor for her grandmother was extremely helpful as the doctor gave more information about the disease to the family and took great care of her grandmother. “My family and I are so happy with the progress and information that is finally around regarding Huntington’s disease. Grandma is currently taking a medication called Austedo (Deutetrabenazine),” Courtney explains. “This medication is used to decrease the involuntary movements (chorea) associated with Huntington’s.”
Currently, the family is active in the HD Community. They have participated in Team Hope Walks (THW). Since the inception in 2007, THW have occurred in over 100 different cities and have raised over $4 million for the cause. The family also makes yearly donations as well as shop for items
on the Huntington’s Disease Society of America (HDSA) website.
Her family continues to show up to be around her grandmother and to make sure that she is always included in the life events. “We still throw her birthday parties,” Courtney explains. “We still throw her and my grandpa anniversary parties. She is included in wedding picture and prom pictures. Family is all you have in this life and Huntington’s cannot come between that.”
Courtney wants the HD Community to know that family is everything: “I grew up around the motto that family means everything. If there is one thing that I have realized through this disease, it is that Huntington’s is not fought alone. Relationships are a huge part of coping with the disease.”
“Our only prayer is that one day there will be a cure.”
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 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.