By Matthew Santamaria (firstname.lastname@example.org)
He was the brunt of many jokes for years. For years, Jim Christus had trouble maintaining his balance, had coordination and memory issues. He also had trouble thinking and forming new words as well as problem solving and cognitive issues.
When people saw this, they would just say “That’s just Jim.” However, this was no joke. His younger sister, Mary, started to develop these same symptoms. Mary was then suggested to be tested for Huntington’s disease (HD) and she was positive. In 2010, Jim was also diagnosed with the disease at the age of 62. It went from being a joke to life threatening.
HD is a fatal genetic disorder which causes progressive breakdown of nerve cells in the brain. It can be described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. The reasons of why he was made of were symptoms of HD. The more he learned about the disease, the more he looked back on his life.
“Prior to the diagnosis, we had not heard of HD so were not prepared at all for what being gene positive meant to us and our lives,” Jim explains. “Neither of my parents were tested for but we know my father must have been gene positive as my paternal uncle tested positive shortly after my diagnosis. When I think about it, my father also showed behavior associated with HD.”
He also looked back at his previous marriage of 27 years. They ended up getting divorced and he believes that HD had a lot to do with that. He remembers the drinking and bad temperament which are also signs of HD.
Jim also realized that this disease would affect his three children. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Currently, they have all decided not to be tested. However, each of their 7 children have a 50% chance of being gene positive. His children are not alone of deciding to not be tested. Only 5-10% of all at risk patients decide to be tested.
“It wasn’t until we met with a genetic counselor that we understood HD would affect not only our lives, but the lives of all of our children, grandchildren, friends, relatives, etc,” said Jim. “The list is endless. HD is genetically inherited but as with all diseases, it affects more than just family in so many different ways.”
At this point, Jim considers himself lucky. His symptoms are not severe at this point as he is just living day by day alongside his wife of almost 20 years, Barb. However, good luck did not translate to Mary. “She is currently in a nursing home in northern Wisconsin,” he explains. “We do not see her often but when we do it’s heartbreaking to see what HD has done to this once vibrant woman. Her symptoms are quite severe and have progressed rapidly. It’s frightening knowing that could be my future as well.”
He is not giving up. He goes to speech therapy exercises regularly and tries to improve his cognitive skills through brain games. Even though he can no longer drive, Jim appreciates nature more and the landscape as a passenger.
However, as his symptoms developed, he saw a different side of people: “I have swallowing, cognitive and speech issues. I sometimes have difficult following and joining in conversations, expressing myself or finding the right words. Some people just don’t “get” that this is HD related, lose patience, talk over me or totally exclude or ignore me.”
In spite of that, Jim has received the full support to the people that truly matter in his life. He also is grateful for the HD support group. He attends monthly support groups and considers them helpful as he met more people with HD.
“We learn so much from others at these meetings and try to be helpful and supportive of all group members,” said Jim. “It was difficult in the beginning to talk of our feelings in the group but now look forward every month to sharing and listening. We have met some wonderful people in this group and we share a common bond. We are not alone.”
He is an active member of the HD community. Even though he has balance and coordination issues, Jim is a runner and can still run a competitive 5k in a little over 30 minutes. He proudly supports the Huntington’s Disease Society of America (HDSA) t-shirts as he wants people to know more about the disease. He was covered in Runners World for not letting HD affect his running and how being active can keep a positive effect on both the mind and body.
“Support is of utmost importance when dealing with a devastating illness,” Jim explains. “However, we believe those giving of their time and of themselves benefit as well. They can learn so much; to understand how an illness can change someone, how to accept someone and their challenges, how love and acceptance can enrich their lives, how taking the time to learn about HD means so much to us, how important it is to have someone to talk to, and to have someone who will always be there to help you and to have your back.”
Not only has Jim participated in HDSA Team Hope Walks/Runs, he has attended local fundraising events that include HD Bingo and the Madison Wisconsin Re-Prom fundraiser, where he was crowned 2016 Re-Prom king. Jim and Barb were also the keynote speakers at the 2018 Wisconsin state conference.
They also spoke alongside other panel members at the University of Wisconsin- Madison
, one of the 47 HDSA Centers of Excellence (COE) facilities, to first year medical students as well as being a study subject at Froeder Hospital for UVM physical therapy class. COE facilities provides patients with expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep 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.
Jim has lived life to the fullest with trips to Hawaii and Alaska. According to Jim, he has had wonderful years of fun, laughter, excitement, and adventure with Barb. He continues to do that everyday of his life.
“We try to remain positive and live each day to the fullest,” Jim explains. “We have learned that you cannot hide from Huntington’s disease. It becomes a huge part of your life. But we don’t let it consume us. We face it and learn a little more each day how to better live with it. Faith plays a large role in our lives as well. Our faith makes us strong in the conviction that God is walking with us through our journey.”
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 (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 email@example.com.