By Matthew Santamaria (msantamaria@hdsa.org)
Florida resident Leslie Thieme has family members that are currently battling 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.
Twenty years ago, Leslie’s mother’s cousin, Mike, started to display unusual behavior. For example, he sat down a lot and was disconnected. According to Leslie, a stranger noticed that he was showing involuntary movements. He was later diagnosed with HD.
The family was unfamiliar with HD but learned quickly about the risk for the family. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Leslie’s mother and her sisters tested positive as well. In 2018, Mike passed away. Currently, the family has four known members diagnosed with HD.
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.
“I would love to see Healthcare workers better educated to care for HD patients whether in hospitals or nursing homes,” said Leslie. “On occasion, I had noticed Healthcare workers unaware of what HD even was and heard horror stories of how late-stage patients have been treated. The only way to eliminate this is through education and research.”
Leslie and her father were the main caregivers. When her father would travel to her work, Leslie would step in and her brother would assist as well.
According to Leslie, patience was key with her father when it came to caregiving. One of the important aspects Leslie remembered is that her symptoms are disease-related and that is not her intention. Leslie’s father told her to keep an eye out for her mother’s symptoms. However, her mother has still been able to maintain an active lifestyle.
As for Leslie and her brother, they were both still at risk for HD. Her brother had decided not to get tested at this time. However, Leslie wanted to get tested.
“All at-risk individuals sometimes hit this wall they are ready to know and some don't I was simply one who decided her life would be better knowing eliminating the what-ifs,” said Leslie. “Though a felt assured this test would come back as certain changes have been happening in my emotional state, I found myself crying less in certain situations or not responding at all as I once did and my anxiety being almost unbearable at times.”
In her life, Leslie has battled depression and anxiety. She wanted to know if HD was the potential cause for this. Also, she wanted to know what her future meant when it came to a relationship.
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.
“I think knowing I had it was the worst part, being so aware of the changes in yourself it's a scary thing,” Leslie explains. “This is all you can think about and at times how bad it will get. You also think about who I will lose as a result and it's those thoughts that at first brought me down so low. I confided in a four-legged friend who would teach me some great lessons to use in life.”
In 2016, after years of hard work, saving, and prayers, Leslie purchased a horse that has changed her life. She named the horse Rowdy.
“Rowdy was used for barrel racing today he does trail rides and is simply a companion,” said Leslie. “Through working with Rowdy, I learned so much about myself and life. Horses take patience, dedication, and trust it's a relationship like no other. Through Rowdy, I have learned to live in the moment not the future nor the past, and not to fear what would happen.”
According to an article by FEI, horses have been proven to reduce our stress levels. Being around and handling horses can assist in dealing with physical and mental issues.
In 2018, her mother got her own horse named Smarty.
“It's been an awesome adventure teaching mom what I know about horses as she develops her relationship with Smarty,” Leslie explains. “Through our equine companions, an instant improvement in mood and anxiety occurs. It's even brought us closer together with something else to share besides the struggles of our HD.”
Through this journey, Leslie has felt more empowered to share her story and become an HD advocate.
“For most of us being advocates is the greatest thing we can do,” said Leslie. “I talk about HD often I have educated my coworkers about it, made bracelets and did a small fundraiser of my own, and continue to live my life one day at a time.”
###
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 msantamaria@hdsa.org
Florida resident Leslie Thieme has family members that are currently battling 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.
Twenty years ago, Leslie’s mother’s cousin, Mike, started to display unusual behavior. For example, he sat down a lot and was disconnected. According to Leslie, a stranger noticed that he was showing involuntary movements. He was later diagnosed with HD.
The family was unfamiliar with HD but learned quickly about the risk for the family. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Leslie’s mother and her sisters tested positive as well. In 2018, Mike passed away. Currently, the family has four known members diagnosed with HD.
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.
“I would love to see Healthcare workers better educated to care for HD patients whether in hospitals or nursing homes,” said Leslie. “On occasion, I had noticed Healthcare workers unaware of what HD even was and heard horror stories of how late-stage patients have been treated. The only way to eliminate this is through education and research.”
Leslie and her father were the main caregivers. When her father would travel to her work, Leslie would step in and her brother would assist as well.
According to Leslie, patience was key with her father when it came to caregiving. One of the important aspects Leslie remembered is that her symptoms are disease-related and that is not her intention. Leslie’s father told her to keep an eye out for her mother’s symptoms. However, her mother has still been able to maintain an active lifestyle.
As for Leslie and her brother, they were both still at risk for HD. Her brother had decided not to get tested at this time. However, Leslie wanted to get tested.
“All at-risk individuals sometimes hit this wall they are ready to know and some don't I was simply one who decided her life would be better knowing eliminating the what-ifs,” said Leslie. “Though a felt assured this test would come back as certain changes have been happening in my emotional state, I found myself crying less in certain situations or not responding at all as I once did and my anxiety being almost unbearable at times.”
In her life, Leslie has battled depression and anxiety. She wanted to know if HD was the potential cause for this. Also, she wanted to know what her future meant when it came to a relationship.
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.
“I think knowing I had it was the worst part, being so aware of the changes in yourself it's a scary thing,” Leslie explains. “This is all you can think about and at times how bad it will get. You also think about who I will lose as a result and it's those thoughts that at first brought me down so low. I confided in a four-legged friend who would teach me some great lessons to use in life.”
In 2016, after years of hard work, saving, and prayers, Leslie purchased a horse that has changed her life. She named the horse Rowdy.
“Rowdy was used for barrel racing today he does trail rides and is simply a companion,” said Leslie. “Through working with Rowdy, I learned so much about myself and life. Horses take patience, dedication, and trust it's a relationship like no other. Through Rowdy, I have learned to live in the moment not the future nor the past, and not to fear what would happen.”
According to an article by FEI, horses have been proven to reduce our stress levels. Being around and handling horses can assist in dealing with physical and mental issues.
In 2018, her mother got her own horse named Smarty.
“It's been an awesome adventure teaching mom what I know about horses as she develops her relationship with Smarty,” Leslie explains. “Through our equine companions, an instant improvement in mood and anxiety occurs. It's even brought us closer together with something else to share besides the struggles of our HD.”
Through this journey, Leslie has felt more empowered to share her story and become an HD advocate.
“For most of us being advocates is the greatest thing we can do,” said Leslie. “I talk about HD often I have educated my coworkers about it, made bracelets and did a small fundraiser of my own, and continue to live my life one day at a time.”
Leslie has a message for the HD Community:
“I try not to focus on the milestones I may not accomplish as I did at first, but focus on one day at a time what can I do today to get closer to one of my dreams? Anytime I do start to worry about my future or wonder when my symptoms may show up, I think of the life lessons I learned from an equine friend, remembering that I'm braver than I know, taller than I feel, and stronger than I think. Don't be afraid of the unknown trail, have faith and ride on.”
“I try not to focus on the milestones I may not accomplish as I did at first, but focus on one day at a time what can I do today to get closer to one of my dreams? Anytime I do start to worry about my future or wonder when my symptoms may show up, I think of the life lessons I learned from an equine friend, remembering that I'm braver than I know, taller than I feel, and stronger than I think. Don't be afraid of the unknown trail, have faith and ride on.”
###
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 msantamaria@hdsa.org