The Huntington’s Disease Symptoms You Should Know

Huntington's Disease (HD) can be defined as a genetic neurodegenerative disorder that impacts an individual’s brain. With time, the nerve cells in the brain usually break down, usually creating problems with movement, emotional control, and intellect. Since HD typically progresses with time, the symptoms may seem mild at first but grow increasingly more serious. Although HD may not be cured or reversed, its symptoms can be slowed and managed through a variety of treatment options. Those living with Huntington’s Disease and their caregivers may benefit from attending therapy sessions with a licensed therapist. Online therapy platforms may make this type of treatment more convenient and effective.

What is Huntington's disease?

Huntington's Disease is generally believed to have been named after George Huntington, an American physician who discovered the condition in 1872 after observing different families who exhibited specific symptoms. HD can be considered a disease of the brain’s nerve cells that usually causes them to break down over time. Symptoms typically begin slowly and then worsen over the years, often causing more problems as an individual ages.

The cause of Huntington’s disease

In general, HD is not contracted but inherited. If you have a family history of HD, you're usually more prone to developing it, but there’s no guarantee you’ll ever have it. HD is believed to come from a gene that mutates before birth. If one of your parents had a defective gene, there may be a 50% chance that you may have it as well. 

Symptoms of Huntington's disease

Those who want to know more about HD probably want to know what symptoms they can expect. Each case can be unique. The amount and frequency of symptoms may differ from person to person. However, it usually gets worse as time goes on. It generally affects how you move and how you think, as well as your psychological well-being.

Movement challenges

Those with HD usually experience involuntary movements, such as sudden jerking or writhing. We may all have had instances where we jerk or shoot up while we're trying to sleep, but those with HD usually have involuntary movements all the time. People with HD may also have trouble with:

• Balancing themselves
• Swallowing foods
• Mouth movements while speaking

These movement challenges can affect a person’s life greatly. It may only take one accidental movement to lose your job, cause injury, or even lead to death. Those who live with HD normally need support as their symptoms worsen over time. Their friends and family may also need to be patient and on the lookout for any involuntary movements that may occur.

Cognitive difficulties 

Those who have HD typically experience cognitive impairments as the disease worsens. These may include the following:

• Difficulty focusing: This is generally more serious than having an occasional day in which you feel unable to maintain concentration. While there can be many reasons why you may have difficulty focusing, HD often makes it a constant occurrence. 
• Feeling mentally stuck: Those who have HD may get stuck in a thought or mentally freeze. 
• Poor impulse control: Someone with HD may have poor impulse control. Everyone's level of impulse control tends to be different, but suddenly worsening impulse control can be an HD symptom.
• Low self-awareness: Those who have HD may have less self-awareness and be unable to critique themselves.
• Memory challenges: Those with HD may not be able to retain new information as easily.

All of us may experience “brain hiccups” from time to time, so if you have trouble focusing occasionally, there’s likely no reason to be concerned. However, it may be worth seeing a doctor if you experience any of these symptoms on a frequent basis. 

Psychological disorders

Those with HD may experience comorbid psychiatric disorders as well. These could include:

• Depression: HD can change the chemistry of your brain, potentially leading to major depressive disorder. Additionally, those with HD may experience depression symptoms associated with their response to the disease, as living with HD can be emotionally and physically challenging.
• OCD: If you’ve never experienced obsessive-compulsive disorder and suddenly find yourself exhibiting OCD-like tendencies, it could be a sign of HD.
• Bipolar disorder: If you start to experience alternating episodes of mania and depression, it could indicate the presence of bipolar disorder.

Symptoms of juvenile Huntington's disease

Though it tends to be very rare, Juvenile HD can occur. Those who have it may experience worse symptoms than those with a later onset since the disease tends to progress faster when onset begins at a younger age.

Symptoms may include:

• Behavioral and school-related issues: Although it can be common for children or teens to encounter these types of issues, if they occur suddenly and are not caused by other factors, JHD may be the culprit.
• Forgetfulness: Being forgetful can be another sign of JHD. Children are often prone to forget about some things, but if your child is forgetful all the time, and there doesn't appear to be another cause, JHD may be to blame.
• Physical challenges: There may be various physical changes in those living with JHD. The loss of motor skills can be common, as can muscle contractions and tremors.
• Seizures: Seizures may occur. If there is no other cause for the seizures, such as epilepsy, they could be a sign of JHD.

Because a lot of the symptoms of JHD can be common childhood struggles, it may take time for a child to be diagnosed with Juvenile HD. If your child has any of these symptoms, a visit to the doctor may confirm their cause.

Progression of HD

Over time, HD generally gets worse. There may currently be no cure or method to reverse it. However, the lifespan of an individual with HD can vary quite a bit. Sometimes, those with HD may live an additional 30 years after being diagnosed. 

HD tends to be fatal. It can damage the brain, and its symptoms may also indirectly lead to death. This usually occurs before the total loss of brain function. Because those with HD often have trouble with balance, falling can be a concern. HD can also cause you to have trouble swallowing, meaning that choking can be another thing to look out for.

Finding relief from Huntington’s disease

Although there may not be a cure or a way to stop or reverse deterioration, there can be ways to slow down HD’s progression and manage its symptoms.

Psychological difficulties and diagnoses related to Huntington’s Disease can often be managed through therapy, medication, and lifestyle changes. Never start or stop any form of medication without the guidance of a licensed medical professional.

Physical therapy can be another way to manage the effects of HD. If you regularly attend physical therapy, it may slow down the loss of your motor skills and help you live a more independent, healthier life.

If you have HD and want to have a child, you may wonder if there is a way to lessen your chances of passing the gene mutation to your children. Some may adopt or have a child using a donor egg or sperm. Genetic counseling may also be an option.

Alternatively, some may utilize a preimplantation genetic diagnosis. With this route, embryos are typically grown using the parent's DNA before being tested for HD. If the embryo lacks the mutated gene that usually causes HD, it can then be implanted in the mother's womb. While this can be a controversial method, it’s ultimately up to the parents whether they’d like to choose this route. For many aspiring parents with HD, it may be the only way to have a child that's genetically theirs with complete certainty that they aren’t passing on the disease.

How online therapy can help

Whether you’re a caregiver of someone with Huntington’s Disease or are living with it yourself, online therapy may be a helpful resource as you navigate life with a chronic condition. Caretakers can learn how to care for themselves while also being there for their loved ones. Those living with Huntington’s Disease or other chronic conditions can learn new coping skills that may help them lead a more fulfilling life. 

Research has shown that online therapy can be useful for addressing a variety of concerns, including chronic diseases such as Huntington’s. A 2023 systematic review investigating the efficacy of online cognitive behavioral therapy for chronic diseases reported that it “improves depressive symptoms, anxiety symptoms, and general psychological distress at post-intervention and across follow-ups, and improves physical distress and functional impairment at post-intervention.”

Read below for reviews of counselors from those who have experienced similar challenges.

Counselor reviews

“I'm just a few sessions in with Joe and I can't express how grateful I am to have been matched with him. I feel completely comfortable talking with him and he has already helped me with some exercises and tools to work through my pain. He is extremely empathetic and kind. I'm optimistic about what will come as we spend more time together.”

“I appreciate Linda’s genuine concern for helping me live a better life for myself and my family. She is honest, responsive, and understanding.”