Living with Huntington's Disease (HD) comes with a unique set of challenges, not just for those diagnosed but also for their families and loved ones. One of the more difficult challenges we often discuss is how HD-related symptoms, particularly outbursts and agitation, can lead to unfortunate legal troubles.
Outbursts in individuals with HD are often linked to the disease’s impact on the brain, which can result in sudden, uncontrollable emotional responses. These outbursts can range from verbal aggression to physical actions, and they are not reflective of the person’s character but rather a symptom of their condition. Note: I know that is hard to decipher as a caregiver when you are looking at your loved one that you have known for so long and they are expressing this behavior that they never had before HD entered your lives.
Medically, our HCP’s often approach this issue with mood stabilizers which help to calm the baseline agitation of many people with HD experience. These medications can make a sometimes-huge difference in reducing outbursts. But we also know families that struggle for years trying to find the right medication to help their loved ones and their family as a whole. This time it takes often results in divorce, loss of family support, being institutionalized, and sometimes even legal trouble.
The Legal Implications
Unfortunately, when outbursts happen in public or involve others, they can lead to legal issues. For example, someone with HD might misinterpret social cues or act impulsively, resulting in actions that are viewed as criminal, like assault or inappropriate behavior. This is a heartbreaking situation because it is not the individual’s fault—they are reacting to a disease they cannot control.
The legal system, however, often operates with a "guilty until proven innocent" mindset, and there is little understanding of HD. In some cases, individuals have been convicted of crimes like sexual assault because they couldn't properly read the cues that someone was uncomfortable. Courts may not recognize HD as a contributing factor, leading to severe consequences like incarceration and a lifetime of being placed on a sexual offender list.
Advocating for Your Loved One
So, what can you do if you find yourself in this situation? Advocacy starts before anything happens. One of the best things you can do is to educate those around you, especially law enforcement. The one thing we hear all the time when attending law enforcement and first responders’ conferences across the nation is they tell us, it is always best to get ahead of the situation before it is too late. Meaning, they want to know when a family lives in the district they serve that is impacted by Huntington’s disease. At Help 4 HD we have tools like brochures, PowerPoints, videos, and other support items to help you approach your local law enforcement to teach them about HD and how they can best support your family.
If legal trouble does arise, having a strong advocate within the court system is crucial. Help 4 HD International can provide resources to help educate attorneys, judges, and everyone involved in the case to understand a little more about Huntington's Disease. Additionally, you can work with your HD center of excellence to get a letter from healthcare providers that outlines your loved one’s condition, treatment, and how HD might have influenced their behavior. This can be a powerful tool in court. Everyone at Help 4 HD wants to make sure that anyone that is going through a legal issue gets access to a fair trial. Head of Help 4 HD Internationals Law Enforcement Education Program (LEEP), Vicki Owen, works tirelessly with law enforcement, judges, legal representatives to make sure everyone is equipped with as much information about HD as possible if we are alerted of one of our community members going through a legal trouble.
Setting Boundaries and Preventing Future Issues
Prevention is always better than reaction. If your loved one is dating or interacting with new people, encourage open communication about what consent looks like and how to navigate relationships safely. It may feel invasive, but keeping track of where your loved one is and who they are meeting can prevent potentially dangerous situations. Simple measures like ensuring the first few dates happen in public spaces, or that you have access to their online interactions, can go a long way in keeping them safe. I know it may feel invasive monitoring their phones and chats, but it may be what is needed to make sure you help your loved one stay out of trouble. There are also amazing tools out there that help track people when they are going on first dates or meeting someone for the first time. These are not bad tools for us to use as well when trying to keep our loved ones safe.
Conclusion
Living with Huntington's Disease is incredibly challenging, and when outbursts lead to legal trouble, it can feel hopeless. But remember, you are not alone. By educating those around you, advocating in court, and setting clear boundaries, you can help protect your loved one.
If you find yourself struggling with these issues, reach out to your local Huntington’s social worker or contact us at Help 4 HD International. We’re here to support you every step of the way.
Katie Jackson
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