By Matthew Santamaria (firstname.lastname@example.org)
It is summer morning in July of 2004 in Colorado. The weather is beautiful outside and Kathleen Bates is looking forward to the day. She wakes up to her husband Jeremy. Kathleen kisses her baby son’s, Logan, forehead and goes to work. She looks back smiling as her husband is holding on to him.
“For some reason, I remember that morning I drove away thinking I have the best life ever,” said Kathleen. “We have a beautiful baby, trying to have another one, we have a beautiful home, and we have great friends and family. Everything is just perfect.”
That day, Jeremy and his best friend were working on finishing the basement. Jeremy was a school teacher and off for the summer. He finally found the time to work on the basement. They had a helping hand in Logan as Kathleen wanted to make sure that Jeremy gave enough attention to Logan. However, his attention ended up being on something else as his life took a drastic turn.
“That night when I arrived home, I could tell something was not right,” said Kathleen. “My husband had looked as though he was crying, which I had only seen two other times in my life: the day we were married and the day our baby son was born.”
He sat her down and explained the situation. Since Jeremy was young, he has not seen or heard of his father. His uncle was trying to find Jeremy’s father after he was paroled from prison. He found him in a nursing home in Texas. He was in his early 50’s at a nursing home. Jeremy talked to the head nurse as the doctors agreed that his father had Huntington’s disease (HD).
This 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.
Kathleen did not know the disease and offered him to live with the family. However, this is not what Jeremy was trying to tell her. He was trying to explain that the disease is genetic and this will also affect Logan’s life as well. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.
“As Jeremy held our son and cried, I went into immediate operations mode,” Kathleen explains. “I grabbed the phone number he had to nursing home where his dad was. Still not knowing what this all meant, I called leaving several questions with head nurse. Then I got on computer and began searching anything I could find out about the disease.”
After researching the disease, she knew that he was not only gene positive but symptomatic to the disease. One of the symptoms that she noticed was that he walked with his foot outward. She never told him that she knew he had it.
The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Other symptoms include personality changes, forgetfulness, slurred speech, difficulty in swallowing, and significant weight loss.
“We met with a social worker and started going to support groups,” Kathleen explains. “Jeremy decided he wanted to be tested right away. At our first appointment, I learned how little was known about this disease, other than it was devastating. The doctor walked into the office and you could tell the moment she read Huntington’s disease in the chart, she wouldn’t look Jeremy in the eye and only looked at me with such sadness.”
“She proceeded to tell me that I needed to prepare my life, it was going to be a hard road. Then she told me to expect him to only live 8-10 years. I left the doctor with Jeremy to examine him and remember sitting at a bench outside the medical building, crying to my mom. I was devastated.”
Jeremy would go through genetic counseling and testing. They saw a therapist a few times as they would prepare you for the results. Then, the week before President’s Day weekend 2005, the blood test came back.
“Although I knew, that 24 hours of waiting to go in took forever, not only for Jeremy and his mom, but for me too. I was hoping I was wrong,” said Kathleen. “As we waited in the doctor’s office for the doctor to come in, I remember Jeremy’s mom, telling him it was going to be negative and he was just fine. Even though I knew, she gave me hope too.”
The test came back gene positive and was symptomatic as well. His doctor suggested him to see a doctor right away to treat it.
“Jeremy’s mom slid down the wall and slumped in the corner sobbing uncontrollably,” said Kathleen. “I hugged Jeremy and reassured him we would get through this together. He was surprisingly calm. Maybe he knew too. He told the doctor and me he wanted to become a lab rat and let scientists study his brain to find a cure. He wanted to ensure his son never got sick from this disease.”
Jeremy would then enroll in clinical trials and research through the Huntington’s Disease Society of America (HDSA) Centers of Excellence. At the facilities, patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have experience working with families affected by HD. They work collaboratively to help families plan the best HD care program throughout the course of the disease.
Jeremy would attend the Rocky Mountain Movement Disorders Center, this is one of the 47 HDSA Centers of Excellence facilities in the country. They would attend support groups every month and would never get discouraged.
“In the early days, I worked hard to hold my head high every time we were together,” said Kathleen. “I would wait until I got in the car to go to work and then I would cry my eyes out. At work, I struggled to stay focused. All I could think is my soul mate was going to die.”
In August of 2006, Jeremy stopped working because he was having trouble focusing, writing, and grading. He would also stop driving as he was beginning to lose his footing. “We decided not to have second child to simplify our lives,” Kathleen explains. “We put our house on the market to buy a townhome with less maintenance and care.”
This is also around the time that Kathleen started to get involved with HDSA. She would go to HD events and help organize the Denver 5K for HDSA’s Rocky Mountain Chapter. Through this, she found much more support and stability. With the help of her best friend Andra, she would help start the Denver Walk which is now known as “Heroes vs Villains 5k Run/Walk for Huntington’s Disease”. In its first year, it raised over $4k. It has now become the largest fundraiser for the Rocky Mountain Chapter.
Then, the family started to work on Jeremy’s bucket list which included spending a lot of time with friends. “We visited Australia, attended a Pittsburgh Steelers football game, Jeremy went skydiving, skiing a few times in mountains, visiting New York and having a reunion with our Albuquerque gang in Snowmass,” said Kathleen. “We really tried to enjoy the years while Jeremy could still fully enjoy. The only thing we did not get to on Jeremy’s bucket list was skiing Whistler in Canada. By the time that we were able to start planning, Jeremy’s movements and lack of focus made it very difficult to travel, much less ski.”
Through it all, Jeremy always had a smile on his face. Whenever he tripped, he would laugh and say “just HD”.
“He liked being home when Logan got out of school as they would play sports outside,” said Kathleen. “During the day while Logan and I were off at school and work, he went for long walks, played video games, surfed the internet and watched a lot of sports. He also took up fishing on a regular basis. There were days he would pack a lunch, have me drop him off on my way to work at a fishing pond, and not pick him up until the end of the day. Depending on where he had me drop him off, it would be a ten hour day.”
However, by 2010, the disease started to worsen. Jeremy would have trouble working to controls on video games and putting a worm on a fishing hook just to name a few. This depressed him as he was not eating a lot. Kathleen would make the tough decision and put Jeremy in Assisted Living against Logan’s wishes.
“It was one of the best decisions I had made,” Kathleen explains. “The nurses and aides loved and doted on Jeremy. He made friends with all the residents. Logan would go stay with him every Saturday day and night. Jeremy loved walking to the dollar store and several of his favorite fast food restaurants.”
“He would also go on field trips and take Access-a-Ride with other residents to theaters and downtown. Within months, Jeremy also took on a volunteer job at Denver’s Art and Science Museum. He worked a couple days a week as a greeter and loved it. He did this for over a year. As the HD progressed, he eventually had to quit.”
Kathleen would then meet her partner, Jeff Eller. She would welcome his three boys in his life. Jeff would be friends with Jeremy as drove Logan to see him. “Our friends, Jeff and our boys and I began doing game days one Sunday a month with the residents and Jeremy at Marycrest. Jeremy loved board games in the winter and we did outdoor activities in the summer,” said Kathleen. “I am proud to say that I think these regular “Sunday Fundays” taught all of us a lot about patience, compassion and flexibility over the years. They are some of my best memories of Jeremy later life.”
By the summer of 2015, his disease progressed and was moved to a skilled nursing home. His nurses moved him to a shared room and close by where all the action was because of his outgoing personality.
“His days of his last year of life were spent sitting by the nurse’s station,” Kathleen explains. “He always loved pretty blondes. After about ten months there, unfortunately, he stopped eating and we moved Jeremy to hospice. Many friends and family came by to say goodbye to him. Jeff, his best friend from South Dakota, got to Hospice just in time and he passed at 3 am on June 28th.”
“He showed us all how to laugh a little more, always put a smile on your face no matter how hard life is, be patient, give to others and unconditional love does exist.”
Over the years, she has become connected with the HD Community. In the coming year, this will be the 15th year of the Denver 5K. She has been involved in many fundraising events, educational forms, and support groups. Kathleen has been on HDSA’s Rocky Mountain Chapter board since 2006 and is now serving her third term as Board President.
“Kathleen works tirelessly in her efforts to recruit volunteer and sponsors and has shown great leadership for the RMC, everyone is excited to welcome her back into the role of President,” said Jeni Farnsworth, South Central Regional Development Director.
Kathleen’s main concern is her son Logan as she wants there to be a bright future for him because she knows that he has a 50/50 of testing positive for HD.
“He carries the burden of knowing that he may have the HD gene. He is a brave and strong kid. Although he has this scare, he is athletic, smart, quick-witted (thanks to Jeremy AND Jeff), funny and social. Wrong or right, the last year or two, I allowed him to step back from seeing his dad. As a caregiver at a young age, he grew up very fast. I wanted him to become a regular teenager and not have to stare this awful disease in the face. Logan has decided he wants to be tested for HD when he turns 18. He would like to know right away. I pray every day he doesn’t have it yet our family works hard to have a normal life and not focus on it. Overall, we are blessed for now that everyone in our family is healthy and we have each other.”
Kathleen has a message for the HD Community: “Get involved, lean and love on each other, be a part of the solution.” If we all come together and work hard to raise funds, bring awareness, participate in research and help each other, we will find 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