NPR’s This American Life with Ira Glass explores a wide range of stories that encompass social issues of all varieties. Several times, this show has covered true stories of those affected by Huntington’s disease.
Dr. Gilmer and Mr. Hyde^
One of the most popular podcasts, titled Dr. Gilmer and Mr. Hyde, is the story of a small town doctor who murders his father for mysterious reasons. Many years later, we learn that Huntington’s disease was the reason behind many of his behaviors. This is the story of how the murder took place and how the man learned he had Huntington’s.
The prologue begins with a setting of the scene. We are in a small town in North Carolina. After a local doctor is sent to jail for killing his own father, a new doctor is hired to fill the position at the local clinic. This new doctor learns that his predecessor was responsible for “strangling [his father] and sawing off [his father’s] fingers.” Even stranger, the murderer’s name is the same as the new doctor’s: Dr. Gilmer.
For clarification, the new doctor in town is Dr. Benjamin Gilmer, and the former doctor imprisoned for murder is Dr. Vince Gilmer. As the new Dr. Gilmer sees more and more patients, his familiar name causes them to speak up about their former doctor. His patients describe the kindness with which Dr. Vince Gilmer treated them, often forgoing payments to help those who were struggling financially.
This man described by his patients seems out of place with the man who committed the murder. However, one patient, Jerol Davis, notes that Dr. Vince Gilmer’s father probably had Alzheimer’s disease. Alzheimer’s disease symptoms often manifest in a similar manner as Huntington’s disease. Considering that Huntington’s disease is a much more stigmatized illness, it makes sense that people would mistake it for a more recognized disease.
Dr. Benjamin Gilmer becomes very curious about the case because the murderous behaviors of Dr. Vince Gilmer seem out of character. He begins to conduct his own investigation to explain Vince’s actions.
At this point, we transition to Act One. Dr. Benjamin Gilmer is becoming more paranoid for his safety, as he starts to imagine Dr. Vince Gilmer escaping prison and coming for him because he took Vince Gilmer’s job.
Dr. Benjamin Gilmer: “I mean, he obviously was crazy when he did this act. It didn’t sound like it was an intentional thing that he– it wasn’t premeditated, as I understand it. I mean this is the trouble. Like I’m still– I’m still confused by whether he was good or not. You know, it’s kind of like living with a ghost in your house. And you tell your kids that it’s a friendly ghost. But you never know where the ghost is coming from.”
We soon learn that in the previous year Dr. Vince Gilmer was involved in a bad car accident. Due to symptoms like chorea, this accident could be caused by a loss of control associated with a movement disorder like Huntington’s disease. Furthermore, some postulated that Dr. Gilmer purposefully crashed the truck in order to obtain a new one. If this is true, this kind of irrational behavior could also be indicative of Huntington’s disease symptoms. If his behavior was motivated by suicidal intentions, that would also fall in line with HD, as the number one “cause of death” for HD patients is suicide. (For more on suicidal ideation, click here.)
Shortly after the accident, Dr. Vince Gilmer suddenly announces a divorce between him and his wife. This is soon followed by his development of a drinking problem. (For more information on substance abuse and HD, click here.)
Next, we learn that Dr. Vince Gilmer’s father, Dalton Gilmer, resides in a psychiatric hospital. We know that he is taking antipsychotic medication and needs a wheelchair or walker at 60 years old. As Vince is moving his father from the hospital to a nursing home, he takes an unusual detour.
We begin to learn more about Vince’s past. His father, Dalton, sexually abused him and his sister, which included “inappropriate sexual remarks and gropes.” Dalton’s wife and Vince’s mother thought that Dalton’s violence and inappropriate behavior was a result of his service in Vietnam.
As Dr. Gilmer was driving the truck from his father’s nursing home, Dalton continued to say “filthy things,” causing Vince to lose self-control and begin to have a compulsion to kill his father. (For more information on sexual impulses and HD, please visit our website here.)
After killing his father, Dr. Vince Gilmer panics and dumps the body, removing his father’s fingers so his body can not be identified. At first, Dr. Benjamin Gilmer postulates that this behavior is a result of traumatic brain injury, which he had studied prior to medical school.
Upon discussion with the detective on the case, we learn that this case is unique in that Dr. Vince Gilmer “was able to kill his father and show no remorse.” During his confession, we receive a major clue in the mystery behind why this murder occurred: lack of serotonin. It is described in the podcast as follows:
“Serotonin, a hormone, a neurotransmitter. If you don’t have the right level of it in your brain, it can affect your mood. Which is why many antidepressants increase your serotonin level. These drugs are called SSRIs, selective serotonin reuptake inhibitors. If you stop taking them abruptly, you can have suicidal thoughts, severe agitation, even psychosis.”
Vince Gilmer admitted that he had abruptly stopped his SSRI regimen and found himself experiencing extreme bouts of irritability. In his own words, he felt “mentally retarded.” And these were just the mental handicaps Vince Gilmer was facing. During an analysis by a clinical psychologist, Vince Gilmer was noted as acting in the following way:
“…spoke in a halting fashion, fidgeted while sitting, stood with a stooped posture, occasionally paced, and gesticulated broadly with his hands while talking. This presentation was very dramatic and not consistent with known anxiety or psychotic disorders.“
Act One ends with Vince Gilmer’s guilty verdict, resulting in a life sentence without possibility of parole. However, one adamant doctor decides to pursue the case further, as explored in Act Two.
As our podcast investigators continue to dive deeper, they decide to interview Vince Gilmer in prison. He has resided in maximum security prison for six years and is still exhibiting symptoms similar to those during his court proceedings. As interviewer Sarah Koenig and Dr. Benjamin Gilmer speak to him, they notice repetitive body movements and an inability to focus. When Sarah is on the phone, we hear Vince Gilmer constantly repeat himself. While never confirmed in the podcast, Vince Gilmer could be experiencing a classic HD symptom of perseveration, the inability to stop one’s self from repeating an action. (For more information on perseveration, click here.)
Dr. Benjamin Gilmer believes that Vince Gilmer had been wrongfully convicted—he was clearly experiencing symptoms of a mental illness. To confirm his theories of SSRI withdrawal, he brought in a psychiatrist, but the psychiatrist quickly rejected the SSRI withdrawal hypothesis, as well as that of traumatic brain injury. As the two are leaving the prison, psychiatrist Steve Buie asks a transformative question: “Could this be Huntington’s?”
The podcast describes HD in the following manner:
Huntington’s disease is a horrible condition, one of the worst. Like a cruel trifecta of Alzheimer’s, Parkinson’s, and Lou Gehrig’s disease rolled into one. It causes severe emotional and physical symptoms. It’s progressive. It’s painful and highly inheritable. If your parent has it, you’ve got a 50/50 chance of getting it… Typically it starts to affect a person between the ages of 35 and 45. Vince’s behavior began to change when he was about 40. And it’s fatal. Once you have symptoms, the brain and body dwindle away. You usually die after about 20 years from a complication like pneumonia or choking.
The psychologist and Dr. Benajmin Gilmer review Vince Gilmer’s symptoms: behavioral disturbances, hallucinations, irritability, moodiness, paranoia, psychosis, abnormal and unusual movements, including facial movements, grimacing, quick sudden jerking movements, unsteady gait, disorientation or confusion, loss of judgment, loss of memory, personality changes, speech changes, anxiety, and stress.
The team knew that genetic testing was the best method of determining if Vince Gilmer actually had the disease, but they were unsure how to go about facilitating a test through prison. Unfortunately, we learn that Vince Gilmer has recently attempted suicide and was moved to a psychiatric hospital. After talking to the social worker there, we learn that it is now possible to test Vince Gilmer.
(The matter of consent is not made explicitly clear in this section of the podcast. We learn that the psychiatrist meets with Vince and that they draw blood, but we are not made aware of Vince Gilmer consenting to a blood draw, especially as a ward of the state. However, consent is always of utmost importance when it comes to genetic testing. No one should be coerced into the process.)
When the results come back, we learn that Vince Gilmer is indeed positive with a CAG count of 43. The CAG count refers to the repeats in the DNA of the building blocks cytosine (C), adenine (A) and guanine (G). (For more information the genetic testing process, watch our HOPES video here.)
Vince Gilmer’s new psychiatrist, Dr. Colin Angliker, delivers the news to Vince. In his own words, he was nervous because delivering such news is “more or less like a death sentence that you’re telling somebody.” However, Vince Gilmer seemed relieved to hear of the news. This reaction is likely due to the extended period of time over which Vince Gilmer has so desperately tried to prove his illness to others. With the diagnosis, Dr. Angliker is able to provide the proper medications.
As noted in the podcast, “Huntington’s kills off brain cells, neurons, which decrease production of neurotransmitters. So all this time, it’s possible Vince did have a serotonin-deprived brain. It’s possible he was right.”
(It took one doctor only two visits to realize that he had a neurologic illness that many other psychiatrists did not recognize. This gap in observation may be a result of the highly stigmatized nature of Huntington’s disease, particularly in rural regions such as North Carolina where medical establishments may not be as informed on the latest neurological disease research. Huntington’s disease has a long history of misdiagnosis, which is still a major problem today.
While Huntington’s disease did not “create a murderer,” it was likely that Vince Gilmer was suffering from symptoms of the disease during the killing. Huntington’s “can cause erratic, agitated, and sometimes uncontrollable behavior.” Dr. Vince Gilmer did note that he wasn’t feeling like himself at the time of the murder. The criminal justice system failed Dr. Vince Gilmer by allowing him to self-represent and failing to properly diagnose the existence and severity of his disease for so many years.)
Dr. Benjamin Gilmer checks in on Vince Gilmer a few months later. While Vince Gilmer is feeling far better, it is revealed that he surprisingly knows little to nothing about the disease. Dr. Benjamin Gilmer must explain that this disease is hereditary and that his sister, her children and her grandchildren are all at risk, as one of their parents passed on the mutant gene. Dr. Benjamin Gilmer also reveals that there are no treatments or cures specific to HD, only methods of treating certain symptoms.
At the end of the podcast, we learn that Dr. Benjamin Gilmer is still trying to get Vince Gilmer released from prison. They are working with a legal team to secure his release.
Overall, the representation and disease description of HD was accurate in this podcast. Due to the limited knowledge and stigma surround the disease, it is not uncommon for law enforcement and HD patients to clash, for the justice system is unable to properly deal with the symptoms that HD causes and how they might be misconstrued as criminal behavior. For more resources on HD and law enforcement, please visit HDSA’s law enforcement guide here.
To listen to the full podcast, click here.
It Says So Right Here^
For this episode, What Are You Doing for the Test of Your Life?, an individual, the youngest of six sisters, decides to undergo genetic testing.
Kelly, 28, is at risk for HD. Her mother has Huntington’s disease and Kelly’s grandfather suffered from the disease as well. The podcast begins on the morning before Kelly receives her test result. Kelly is nervous and says that she has “butterflies.” She describes this day like Christmas: “You wake up, open your presents, except it could be the worst present of your life, or the best.”
Of her five other sisters, there are at least two individuals who show signs of HD. Kathy, Kelly’s oldest sister, is 42 years old. She was primarily responsible for taking care of Kelly and Kathy’s mother growing up. Kathy is now symptomatic. Upon interviewing her sister, Kelly admits one of her fears: “What if your mind is trapped inside this body that can’t move?”
Kelly and her sisters describe their mother’s current condition and what it was like growing up in a family affected by HD. Kelly admits that she found herself often embarrassed and mad at her mom, a common occurrence among children with parents affected by the disease. While the children may or may not understand what is happening, many parents start showing symptoms around a child’s teenage years, a difficult time for self-development and relationships, particularly when trying to forge friendships and socialize.
Kelly then asks Kathy why she never got tested. Kathy responds:
Kathy: Insurance, denial of wasting my life…
Kelly: …like you feel like you didn’t do what you should have done?
Kathy: Yeah. I should have lived more.
Kelly: For me, it is, I don’t know if I’ll be liberated if they tell me I have it because, like you said you think about it everyday and if you know you have it, like you said, I’m going to live balls to the wall. I’m going to do everything, I’m going to make a list and do everything I want to do.
Kathy: None of us should be having kids.
Kelly: For me, it’s more so the care of the child. Now I don’t want my kid to go through what I went through. I had you to raise me, thank god, but with Mommy, I saw the most terrible part of someone that was supposed to be my mother.
At this point, we are introduced to the complex and difficult conversation of child rearing in HD families. Kathy believes that none of her sisters should have children, presumably because of the risk of passing on the mutant gene. However, for Kelly, she does not want to have children because she does not want to subject her children to the type of childhood that Kelly had.
We later learn that Kelly’s niece, Kathy’s daughter, Kayla, will accompany Kelly to the genetic testing appointment. Kayla describes Kelly as her only family support. Kayla was genetically diagnosed with Huntington’s disease, but has not told her mother since her mother is already experiencing depression, and Kayla fears pushing her over the edge. Kayla deals with difficulties in finding support systems:
I don’t have any family support besides Kelly, like mom or dad. Kelly is the only person I have who understands it, that is behind me on it. I haven’t told anyone in my family really besides Kelly. We’ve talked about it our whole lives and I don’t want her to have it but it’s like one part of me that if Kelly has it, I’m not alone. So I have really mixed feelings on it. Since I’ve found out my results, I smoke more. I really do. Now I’m like, screw it. Before people were like, “Oh it’s so unhealthy, you’ll get cancer” and I’m like what more can happen, you know what I mean.
Support systems are of utmost importance in HD families. Sometimes, it is not possible to find those support systems within one’s own family. However, if possible, one may be able to obtain the support of a counselor or local support group. (For a listing of HD support groups in your area, click here.)
Kelly describes her method of coping with the results. She has planned a packed few weeks of activities in order to distract herself and provide a healthy outlet for coping. Kayla, upon learning her test results, spent the night eating pizza and watching stand up comedy routines. Every individual has different methods of coping. It is important to identify which is best for you and to ensure that method is healthy and does no harm to one’s self or others.
Genetic counselor (GC): Have you been nervous or pretty chill?
Kelly: I just want to throw up.
GC: You do? Okay. Do you want me to cut right to the chase?
Kelly (laughing): I don’t know.
GC: Okay, Well, I’m happy to do that, um, unless you guys wanted to talk a little bit…
In unison her boyfriend, Kelly: No. We just want to know.
Boyfriend: We just want to get to it.
GC: Some people want to have a conversation about what would happen, you know, okay great. Your results were normal. You’re not going to have Huntington’s disease. It’s not what you were expecting, I know.
(Analysis: This conversation highlights the sensitive role of a genetic counselor. It is clear that the genetic counselor did not have a previous conversation with Kelly regarding the methods by which she wanted her tests results delivered. The genetic counselor makes Kelly’s tensions rise as she tries to engage in friendly conversation. The counselor even notes that “some people want to have a conversation.” However, the genetic counselor should have ascertained that desire before the results day appointment.)
After the shock has worn off, Kayla, the niece, asks for some time alone. As somebody who has tested positive for the disease, it is difficult to hear a loved one is negative, and escaped, in a sense, from the disease. While the results severely impact the life of the individual tested, HD is a family disease. These results affect many family members and loved ones in a variety of ways, which explains why Kayla hides her disease status from her mother. Kelly regrets bringing Kayla. While she wanted Kayla’s support, she retrospectively realizes the impact that the results have on her niece.
The genetic counselor and Kelly discuss Kayla’s reaction. Kelly notes that now, at least she can take care of Kayla. This is a heartbreaking moment as it exposes the lifelong impacts of Huntington’s disease. While one individual tests negative, it is very likely that they become caregivers for other members of the family affected by the disease.
Overall, this podcast accurately reflects the challenges of genetic testing and the emotional investment in the disease.