Huntington’s Disease Care in Grand Rapids, Michigan

Huntington’s disease (HD) is a progressive brain disorder that causes the death of brain cells in specific areas of the brain. Over time, this leads to a gradual loss of:

  • Cognitive (thinking and memory) function
  • Physical (movement and coordination) abilities
  • Emotional and behavioral control

There is currently no cure for Huntington’s disease. In Grand Rapids, Michigan, individuals and families affected by HD can access specialized care, genetic counseling, and support through major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, University of Michigan Health–West (Metro Health), and Mercy Health, as well as community resources like the Kent County Health Department.

The most recognizable movement symptom of Huntington’s disease is chorea—jerky, involuntary movements of the arms, legs, face, or body.

What Is Huntington’s Disease?

Huntington’s disease is a hereditary, neurodegenerative condition. As brain cells are damaged and die, people experience:

  • Uncontrolled movements (chorea, fidgeting, difficulty with balance)
  • Changes in thinking (trouble planning, concentrating, or organizing)
  • Emotional and behavioral changes (mood swings, irritability, depression)

Chorea often begins as mild twitching and gradually becomes more noticeable over the years. Many people with HD also develop difficulties with:

  • Speech (slurred or slow speech)
  • Swallowing (choking or coughing while eating)
  • Concentration and decision-making

In West Michigan, these symptoms can make daily tasks more challenging, especially during icy winters when balance and coordination issues increase the risk of falls.

Causes: Huntington’s Disease and Genetics

A Disease Caused by an Altered Gene

Huntington’s disease is caused by a change (mutation) in a single gene, called the HTT gene. This altered gene is passed from parent to child in an autosomal dominant pattern. That means:

  • A child of a parent with the HD gene has a 50% chance of inheriting the altered gene.
  • If the child inherits the gene, they will almost certainly develop Huntington’s disease at some point in their life.
  • If they do not inherit the gene, they will not develop HD and cannot pass it on.

The condition is usually not obvious at birth or during childhood. Symptoms most often begin when a person is approaching middle age (30s–50s), but onset can be earlier or later.

In rare cases, children and teenagers develop Juvenile Huntington’s Disease, which tends to progress more quickly and may look different from adult-onset HD.

Progression and Life Expectancy

Huntington’s disease affects each person differently, but it is generally:

  • Slow and progressive – symptoms worsen gradually over many years
  • Long-term – most people live 15 to 25 years after the first noticeable symptoms

As the disease advances, individuals often need increasing support with:

  • Walking and balance
  • Eating and swallowing
  • Communication
  • Personal care and daily activities

In Grand Rapids, long-term care and symptom management may involve a team that includes neurologists, mental health professionals, speech therapists, physical and occupational therapists, and social workers from local health systems and community agencies.

Diagnosis and Genetic Testing in Grand Rapids

How Huntington’s Disease Is Diagnosed

A diagnosis is usually based on:

  • Family history of Huntington’s disease (when known)
  • Neurological examination (movement, balance, reflexes, coordination)
  • Cognitive and emotional assessment (memory, thinking, mood, behavior)
  • Genetic testing to confirm the presence of the altered HTT gene

In West Michigan, neurologists at Corewell Health, Trinity Health Grand Rapids, and other local providers can evaluate symptoms and coordinate genetic testing.

Predictive Genetic Testing

People who have a family history of Huntington’s disease but do not yet have symptoms can choose to have a predictive genetic test to see if they carry the HD gene.

Key points about testing:

  • You must be at least 18 years old.
  • Testing is voluntary and entirely a personal choice.
  • Genetic counseling is strongly recommended before and after testing.

In Grand Rapids, genetic counseling services are available through major hospital systems and can help you:

  • Understand your risk and test results
  • Consider the emotional impact of knowing your gene status
  • Discuss family planning, insurance, and employment concerns
  • Connect to support groups and community resources

The Kent County Health Department and local public health agencies can also help direct families to appropriate specialists and support services.

Types of Huntington’s Disease Symptoms

Huntington’s disease symptoms typically fall into three main categories:

1. Physical (Movement) Symptoms

Common physical symptoms include:

  • Jerky, involuntary movements (chorea)
  • Mild twitching of the fingers or toes
  • Lack of coordination and clumsiness
  • Difficulty with balance and walking
  • Problems with speech and swallowing
  • Muscle stiffness or rigidity in later stages

Michigan’s cold, icy winters can make movement and balance issues more dangerous. Extra care is needed to prevent falls on snow and ice, especially for people living independently in the Grand Rapids area.

2. Cognitive (Thinking) Symptoms

Cognitive changes may include:

  • Difficulty concentrating
  • Trouble learning new information
  • Problems making plans or organizing tasks
  • Slower thinking and difficulty making decisions
  • Trouble doing more than one thing at a time

People with HD often remember the parts of a task, but not the correct order. For example, they might:

  • Fill the sink with hot water to wash dishes
  • Then put dirty dishes away without washing them

3. Emotional and Behavioral Symptoms

Emotional and behavioral changes can be some of the most challenging aspects of HD. These may include:

  • Mood swings
  • Irritability or aggression
  • Apathy (lack of motivation or interest)
  • Depression and anxiety
  • Reduced awareness of social rules or other people’s feelings

Around one-third of people with Huntington’s disease experience depression. Symptoms like low mood, lack of drive, or changes in sleep and appetite should be medically evaluated, not simply assumed to be “part of the disease.”

Mental health support is available in Grand Rapids through hospital-based behavioral health programs, private therapists, and community clinics.

Depression and Mental Health Support in Grand Rapids

Treatment Options for Depression in Huntington’s Disease

Depression in HD is treatable. Management may include:

  • Medications (antidepressants) prescribed by a primary care provider, psychiatrist, or neurologist
  • Psychotherapy (counseling) to help with coping, grief, and adjustment
  • Lifestyle strategies, such as:
    • Regular, gentle exercise (for example, walking indoors at malls or community centers during harsh Michigan winters)
    • Safe, moderate sunlight exposure when weather permits
    • Enjoyable activities integrated into daily routines

Local resources in Grand Rapids include:

  • Behavioral health services at Corewell Health, Trinity Health Grand Rapids, and University of Michigan Health–West
  • Community mental health programs and support groups
  • Guidance from the Kent County Health Department and local public health organizations

Understanding Behavioral Changes in Huntington’s Disease

Behavioral challenges in HD are often due to:

  • Direct damage to brain areas that control behavior and impulse regulation
  • The emotional impact of living with a chronic, progressive illness

Not everyone with Huntington’s disease will experience the same behavioral problems. Changes can range from:

  • Mild and barely noticeable
  • To severe and disruptive

It is important for family members, friends, and caregivers in Grand Rapids to understand that:

  • Many behaviors are not under the person’s conscious control.
  • The person may be trying to express needs or discomfort but cannot do so clearly because of speech or movement difficulties.

Practical Strategies for Families and Caregivers

1. Supporting Motivation and Daily Activities

The parts of the brain that help with planning, organizing, and starting tasks are affected by HD. A person with Huntington’s disease may appear “lazy” because they:

  • Stay in bed or sit watching TV if left alone
  • Struggle to begin tasks even if they want to do them

Suggestions for family members, friends, and carers:

  • Understand that yelling or arguing will not motivate the person.
  • Take the lead: do activities together and gently encourage them to join in.
  • Focus on participation—helping the person contribute boosts their sense of worth and may reduce depression.
  • Avoid taking over all tasks; allow them to do what they safely can.

2. Helping with Task Sequencing

Complex tasks require steps in a specific order. People with HD may:

  • Know the individual steps
  • But struggle to put them in the correct sequence

Caregiver tips:

  • Supervise and guide tasks step-by-step.
  • Break activities into small, clear steps.
  • Encourage the habit of doing one thing at a time.

This can be especially helpful for household chores and self-care routines.

3. Creating a Calm Environment

People with Huntington’s disease often find it difficult to:

  • Focus on more than one thing at once
  • Filter out background noise

For example:

  • Eating a meal while watching TV or listening to music can be very difficult.

Recommendations:

  • Serve meals in a quiet, calm environment.
  • Encourage the person to focus on one activity at a time (e.g., eating without distractions).
  • Remember that even walking may require concentration, so talking while walking may be hard.

4. Supporting Personal Care and Routines

A person with HD may:

  • Appear more careless about housework or personal hygiene
  • Not notice when they have made mistakes

Suggestions:

  • Recognize they are trying their best—this is the disease, not laziness.
  • Make it a habit to check their work (for example, whether they have bathed or taken medications).
  • Establish consistent routines for bathing, dressing, and meals.
  • Do not automatically take away tasks because it is easier to do them yourself; continuing to contribute helps maintain dignity and self-esteem.

Managing Inappropriate or Socially Difficult Behaviors

As Huntington’s disease progresses, awareness of social norms can decline. This may lead to:

  • Lewd or rude comments
  • Reduced feelings of shame, embarrassment, or fear that usually help control behavior

Caregiver strategies:

  • Understand that explaining “why it’s wrong” may not be effective.
  • Yelling or arguing usually does not help.
  • Instead, set clear, simple rules and gently reinforce them.
  • You may need to limit certain social situations.
  • Educate friends, family, and community members when possible, so they understand these behaviors are part of the disease, not intentional rudeness.

Grand Rapids families may find it helpful to connect with local and online Huntington’s disease support groups to share strategies and reduce isolation.

Irritability, Anger, and Rigidity in Thinking

Some people with Huntington’s disease:

  • Become easily irritated or angered
  • Have difficulty seeing things from another person’s perspective
  • May seem self-centered or inflexible

Suggestions for caregivers:

  • Remember that the disease affects flexible thinking and empathy.
  • Keep routines familiar and predictable, as people with HD often feel more comfortable in known environments and situations.
  • Allow the person as much control over their choices as safely possible (for example, choosing their own clothes).
  • Look beneath the behavior—spitting out food may mean their mouth is too full, not that they are trying to be difficult.
  • Follow the general rule: one thing at a time. Trying to do multiple things at once can cause agitation.
  • Focus on and praise positive behaviors, and try to ignore minor negative ones when safe.

Communication and Speech Changes

As Huntington’s disease progresses, the brain areas that control:

  • Facial muscles
  • Tongue
  • Throat and speech

can be significantly affected. This may cause:

  • Slurred or slow speech
  • Difficulty forming words
  • Reduced ability to start conversations

However, understanding is usually less affected than speech. Many people with HD can still understand what is being said, even if they struggle to respond.

Communication Tips for Families and Caregivers

  • Do not assume the person cannot understand you just because they cannot answer easily.
  • Do not rush them; allow plenty of time for responses.
  • If they are having trouble speaking, ask if they want help rather than automatically finishing their sentences.
  • Offer simple choices instead of open-ended questions, for example:
    • “Would you like pasta or fish for dinner?”
    • Instead of “What do you want to eat?”
  • Consider using tools such as:
    • Flash cards with common words or responses (“yes,” “no,” “tired,” “pain”)
    • Communication boards or apps recommended by a speech therapist

If speech is eventually lost:

  • Continue talking to them as you normally would.
  • Avoid treating them as if they are not present; this can increase feelings of isolation.

Speech-language pathologists in Grand Rapids–based health systems can help families develop personalized communication strategies and swallowing safety plans.

Local Support and Resources in Grand Rapids, Michigan

Families in the Grand Rapids and West Michigan region have access to a range of supports for Huntington’s disease, including:

  • Neurology and movement disorder clinics at Corewell Health, Trinity Health Grand Rapids, and University of Michigan Health–West
  • Genetic counseling and testing services
  • Mental health and counseling services for depression, anxiety, and caregiver stress
  • Rehabilitation services, including physical, occupational, and speech therapy
  • Home health and long-term care options for advanced stages of HD
  • Information and referrals through the Kent County Health Department and local public health programs

These services can help individuals and families manage symptoms, plan for the future, and maintain the best possible quality of life.

Key Points About Huntington’s Disease

  • The most common movement symptom is jerky, involuntary movements of the arms and legs, known as chorea.
  • Huntington’s disease is caused by an altered gene passed from parent to child.
  • Symptoms usually, but not always, first appear in middle age.
  • A person with Huntington’s disease may live 15 to 25 years after symptoms begin.
  • A child of a parent with the HD gene has a 50% chance of inheriting it.
  • Individuals at risk can choose to have genetic testing (age 18+), ideally with genetic counseling.
  • While there is no cure, comprehensive care and support in Grand Rapids can help manage symptoms and improve quality of life for individuals and families living with Huntington’s disease.