Losing Control? Why Your Brain Is Changing with Huntington's Disease — and Medically Approved Next Steps

If you or someone you love has been diagnosed with Huntington's disease, or you're worried about possible symptoms, you may feel like things are slowly slipping out of your control. Changes in movement, mood, or thinking can feel confusing and even frightening.

It's important to understand this clearly: these changes are not a personal failure. They are the result of measurable changes happening in the brain. And while Huntington's disease is serious, there are meaningful next steps you can take to manage symptoms and plan ahead.

Let's walk through what's happening, why it happens, and what doctors recommend you do next.

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What Is Huntington's Disease?

Huntington's disease is an inherited neurological disorder. It causes progressive degeneration (breakdown) of certain nerve cells in the brain, especially in areas called the striatum and basal ganglia, which help control:

• Movement
• Emotions
• Decision-making
• Planning
• Behavior

The condition is caused by a mutation in the HTT gene. If one parent carries the gene mutation, each child has a 50% chance of inheriting it.

Symptoms usually begin between ages 30 and 50, but they can appear earlier or later.

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Why You May Feel Like You're "Losing Control"

Many people describe Huntington's disease as feeling like their body or mind isn't cooperating anymore. That experience makes sense neurologically.

As nerve cells in the brain gradually deteriorate:

1. Movement Becomes Unpredictable

Damage to the striatum interferes with smooth muscle control. This can cause:

• Involuntary jerking or twitching (called chorea)
• Clumsiness
• Difficulty with balance
• Trouble swallowing
• Slurred speech

These movements are not intentional. They are the result of disrupted brain signaling.

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2. Thinking and Judgment Change

Huntington's disease also affects the brain's executive function centers. You may notice:

• Slower thinking
• Difficulty organizing tasks
• Trouble concentrating
• Poor impulse control
• Difficulty making decisions

This is not laziness or carelessness — it reflects structural brain changes.

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3. Mood and Personality May Shift

Emotional changes are often among the earliest symptoms. These may include:

• Depression
• Irritability
• Anxiety
• Apathy (loss of motivation)
• Mood swings

In some cases, individuals may not recognize their own changes, which can be distressing for family members.

If depression includes thoughts of self-harm, that is urgent and requires immediate medical attention.

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What Is Happening Inside the Brain?

In Huntington's disease:

• The abnormal huntingtin protein builds up inside neurons.
• Neurons in the striatum become damaged.
• Brain cells gradually die.
• Brain volume decreases over time.

This process is progressive. Currently, there is no cure that stops or reverses the disease. However, treatments can reduce symptoms and improve quality of life.

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How Huntington's Disease Is Diagnosed

Diagnosis typically involves:

• A detailed neurological exam
• Family history review
• Genetic testing (blood test confirming the HTT mutation)
• Brain imaging (MRI or CT scan in some cases)

If symptoms overlap with other neurological conditions affecting the basal ganglia and striatum, it can be helpful to use Ubie's free AI-powered Striatal Substantia Nigra Degeneration symptom checker to clarify your symptom patterns and prepare specific questions for your doctor visit.

However, online tools are not a diagnosis. A confirmed diagnosis requires medical evaluation.

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Medically Approved Next Steps

Although Huntington's disease cannot yet be cured, there are well-supported strategies that can make a real difference.

1. Work with a Neurologist Experienced in Huntington's Disease

This is critical. A specialist can:

• Confirm the diagnosis
• Track disease progression
• Prescribe medications for movement or mood symptoms
• Coordinate long-term care

You may also benefit from care at a dedicated Huntington's disease center.

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2. Medications to Manage Symptoms

There is no medication that stops disease progression, but several help manage symptoms:

For movement (chorea):

• Tetrabenazine or deutetrabenazine
• Certain antipsychotic medications

For mood symptoms:

• Antidepressants (such as SSRIs)
• Mood stabilizers
• Antipsychotics (if needed)

Medication plans are highly individualized. Side effects must be monitored closely.

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3. Physical Therapy

Physical therapy can:

• Improve balance
• Reduce fall risk
• Maintain mobility longer
• Teach safe movement techniques

Early intervention is beneficial.

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4. Speech and Swallowing Therapy

As swallowing becomes more difficult, a speech-language pathologist can:

• Provide swallowing exercises
• Recommend safer food textures
• Reduce choking risk

This becomes especially important as the disease progresses.

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5. Mental Health Support

Depression and anxiety are common — and treatable.

Options include:

• Therapy (cognitive behavioral therapy can be helpful)
• Medication
• Support groups

Emotional symptoms are not "just part of the disease" — they deserve treatment.

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6. Genetic Counseling

Because Huntington's disease is inherited:

• Family members may consider genetic testing
• Reproductive counseling may be appropriate
• Psychological support before and after testing is strongly recommended

Testing is a personal decision. It should never be rushed.

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7. Plan Early — While Thinking Is Clear

This can feel uncomfortable, but it is empowering.

Consider:

• Advance healthcare directives
• Power of attorney
• Financial planning
• Long-term care planning

Making decisions early ensures your wishes are respected later.

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Lifestyle Changes That Support Brain Health

While lifestyle changes do not stop Huntington's disease, they can improve overall function:

• Regular physical activity
• Balanced nutrition
• Structured daily routines
• Good sleep habits
• Avoiding alcohol and illicit drugs

Staying socially engaged also helps preserve cognitive function longer.

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What Huntington's Disease Is Not

It's important to correct common misconceptions:

• It is not caused by something you did.
• It is not contagious.
• It is not a mental weakness.
• It is not purely a movement disorder — it affects thinking and mood as well.

Understanding this reduces unnecessary shame and stigma.

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When to Seek Immediate Medical Care

Speak to a doctor urgently if you notice:

• Suicidal thoughts
• Severe depression
• Frequent falls
• Significant weight loss
• Trouble swallowing
• Sudden worsening of symptoms

Any life-threatening or rapidly worsening symptom requires immediate medical evaluation.

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What the Future Holds

Research into Huntington's disease is ongoing. Current areas of study include:

• Gene-silencing therapies
• RNA-targeted treatments
• Neuroprotective drugs
• Stem cell approaches

Clinical trials are active worldwide. Ask your neurologist whether participation may be appropriate.

While there is no cure yet, progress in understanding the disease at the genetic level has been significant over the past two decades.

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A Balanced Perspective

Huntington's disease is serious and progressive. That is the reality.

But many people live meaningful lives for years after diagnosis. With proper medical care, emotional support, and proactive planning, you can:

• Reduce complications
• Maintain independence longer
• Improve safety
• Protect your mental health
• Support your family through informed decisions

You are not powerless — even if the disease feels that way at times.

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The Most Important Next Step

If you are noticing symptoms such as involuntary movements, personality changes, or cognitive decline — do not self-diagnose.

• Consider using Ubie's Striatal Substantia Nigra Degeneration symptom checker to organize your observations and prepare detailed information for your doctor.
• Then schedule an appointment with a qualified physician or neurologist.
• If symptoms feel severe, sudden, or life-threatening, seek immediate medical care.

Only a licensed medical professional can confirm whether you or a loved one has Huntington's disease and recommend appropriate treatment.

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Final Thought

Feeling like you're losing control can be deeply unsettling. But understanding why these changes happen — and knowing your medically approved next steps — restores a measure of control.

If you are concerned about Huntington's disease, speak to a doctor. Early evaluation, supportive care, and informed planning make a meaningful difference.

You are not alone — and help is available.