How I Got My Life Back From Dystonia: A Founder's Story

This article is based on a video originally published on the Hope for Dystonia YouTube channel.

There were years when I spent entire days in bed, months at a time. The pain in my face, neck, and body was unbearable. Speaking, chewing, and walking—the most basic activities—felt impossible.

My right side spasmed constantly, trying to do everything. My left side had essentially gone to sleep.

But I got my life back.

Not through a single miracle intervention or by overpowering my symptoms with force. I got my life back by learning to listen—by replacing the dysfunctional inputs that had taught my body to protect itself through chronic tension with functional inputs that pointed my nervous system toward ease, freedom, and safety.

This is the story of how that happened. I'm sharing it not because my journey is exceptional, but because it demonstrates what becomes possible when you understand dystonia as learned patterns that can be relearned.

If I could do this—and if the hundreds of people I've worked with over the past six years can do this—you can too.

Watch the Full Story

How I got my life back from DYSTONIA (and what I learned along the way)―

The Multiple Factors Behind My Dystonia

Like most people with dystonia, my symptoms didn't emerge from a single cause. They developed through the convergence of multiple factors, each contributing to my nervous system's vulnerability.

1. The Anatomical Factor: An Open Bite

When I was young, a series of dental decisions and accidents left me with an open bite on the left side—a gap between my upper and lower teeth that prevented proper contact.

The cascade that followed:

My tongue began thrusting between the teeth, attempting to create the stability my jaw couldn't find through normal tooth contact. Over time, my brain learned to essentially ignore the left side of my jaw and compensate by overusing the right side.

That compensation became chronic spasm. My right side worked constantly, excessively. My left side remained underutilized, weak, forgotten.

This created the fundamental asymmetry—the hypertonic (overactive) versus hypotonic (underactive) pattern—that would eventually express itself as dystonia.

2. The Developmental Trauma Factor

The anatomical issue alone doesn't explain why my nervous system chose this particular compensatory strategy or why it became so entrenched.

The deeper factor was developmental trauma.

I grew up with parents who did their absolute best and who loved me. But they themselves hadn't received what they needed in their own childhoods. They couldn't give me what I needed to develop:

• A resilient nervous system
• Healthy regulatory capacity
• The ability to stay in balanced states rather than spiking between sympathetic activation and freeze responses

I developed chronic dysregulation—a baseline state of nervous system imbalance that made me vulnerable to physical compensation patterns becoming locked in place.

3. The Genetic Predisposition Factor

Like many people with neurological disorders, I have genetic predispositions that contributed to my dystonia:

Difficulty detoxifying:

• Tendency to accumulate heavy metals
• Impaired clearance of environmental toxins
• Genetic variants affecting detoxification pathways

Viral susceptibility:

• Vulnerability to viruses that affect the nervous system
• Reduced immune capacity to keep viral loads in check
• Viruses that feed on accumulated toxins, creating a reinforcing cycle

These genetic factors didn't cause my dystonia directly, but they created conditions where my nervous system was more vulnerable to dysfunction.

4. The Toxicity and Viral Factor

The accumulation of toxins and the presence of nervous system-affecting viruses created an inflammatory environment that exacerbated all the other factors.

When your nervous system is dealing with:

• Heavy metal burden
• Viral inflammation
• Toxic load affecting neurotransmitter function

...it's far more likely to adopt rigid, protective patterns and far less able to release them.

The Convergence

None of these factors alone would necessarily have created dystonia. But together, they created the perfect conditions:

Anatomical asymmetry + Developmental dysregulation + Genetic vulnerability + Toxic/viral burden = A nervous system that learned chronic protective patterns it couldn't release

This is why single-factor approaches to dystonia often provide limited relief. Comprehensive recovery requires addressing multiple levels simultaneously.

What My Dystonia Looked Like: The Lived Experience

Before diving into recovery, it's important to understand what I was living with—because if you're reading this, you may recognize your own experience reflected here.

The Three Impossible Activities

Three basic human activities became nearly impossible:

Speaking: My jaw, tongue, and facial muscles would spasm, making clear speech difficult and exhausting

Chewing: Eating required so much effort and created so much pain that meals became ordeals to avoid

Walking: The asymmetry in my body meant that moving through space was painful, uncoordinated, and depleting

These weren't inconveniences. They were barriers to basic participation in life.

The Pattern of Days

My life contracted to what I could manage:

On bad days (which lasted months):

• Spending entire days in bed
• Getting up only to wash a few dishes—that one task exhausting my capacity for the day
• Living with unbearable pain in my face, neck, and entire right side
• Watching life happen around me without being able to participate

On better days:

• Slightly more functional, but still severely limited
• Always aware that the bad periods would return
• Never able to fully trust my body or make plans with confidence

The Fundamental Asymmetry

The core pattern was clear:

Right side: Thought it had to do everything. Constantly spasming, bracing, working frantically to compensate for the left side's inactivity.

Left side: Dead, sleepy, forgotten. Essentially offline, contributing nothing, creating a void the right side tried desperately to fill.

This wasn't just physical—it reflected a whole-system dysregulation where my nervous system had learned a profoundly imbalanced way of organizing itself.

The Shift That Changed Everything: From Fighting to Opening

The transformation in my healing journey didn't come from finding the perfect exercise, supplement, or practitioner (though all of those had roles to play).

It came from a fundamental shift in how I related to my symptoms.

What I Was Doing Before: Fighting

In those moments when I was stuck in bed, unable to function, I would:

Try to fight what was happening

• Resist the pain and spasms
• Battle against my body's state
• Create more tension trying to overpower the tension

Attempt to force change through willpower

• Tense up more, thinking I could be "stronger than the dystonia"
• Push through symptoms as though force would break the pattern
• Maintain a combative relationship with my own nervous system

This approach not only didn't work—it actively reinforced the patterns I was trying to release.

The Smarter Approach: Opening Up

The shift came when I learned to do something completely different:

Stop fighting.

Instead of trying to overpower dystonia, I began opening up from the heart so I could relate to what was happening with:

Compassion Meeting my symptoms with kindness rather than combat

Curiosity Wondering what the patterns were communicating rather than demanding they disappear

Understanding Recognizing that the tension was my body's attempt to protect me

This wasn't passive acceptance or resignation. It was active, engaged relating—but from a fundamentally different stance.

Why Opening Allowed Change

When you fight your symptoms, your nervous system perceives threat. When it perceives threat, it doubles down on protective patterns.

When you open to your symptoms with compassion and curiosity, something different becomes possible:

Safety signals increase Your nervous system can sense that the internal environment is less dangerous

Defensive patterns can soften When you're not fighting the protection, the protection can begin to release

Communication becomes clear You can finally hear what your body has been trying to tell you

New patterns become accessible In the space created by opening, your nervous system can experiment with alternatives

This shift—from fighting to opening—created the foundation for everything else that followed.

The Path to Recovery: Replacing Dysfunctional Inputs With Functional Ones

Once I could relate to my symptoms differently, I could begin the systematic work of retraining my nervous system.

The core principle: I got my life back by substituting all the dysfunctional inputs that had caused my body to learn protective patterns with functional inputs that pointed my nervous system toward ease, freedom, safety, and relaxation.

Understanding Dysfunctional vs. Functional Inputs

Dysfunctional inputs are anything that teaches your nervous system to:

• Brace, guard, or protect chronically
• Maintain asymmetry and compensation
• Stay in sympathetic activation or dorsal vagal shutdown
• Organize around threat and unsafety

Functional inputs are anything that teaches your nervous system to:

• Release, open, and trust
• Find balance and symmetry
• Move fluidly between regulatory states
• Organize around safety and connection

Recovery involves systematically identifying the dysfunctional inputs and replacing them with functional ones.

The Key Elements of My Recovery

My healing involved working across multiple dimensions simultaneously.

1. Working With Self-Compassion to Release Emotional Knots

The tension in my body wasn't just physical—it carried emotional content.

I learned to:

Recognize what the patterns were protecting Each area of chronic tension was guarding some vulnerability, some unmet need, some pain I hadn't been able to process

Meet those parts with compassion Instead of trying to force them to release, I learned to understand what they needed

Release the emotional charge Through self-compassion practices, the emotions held in the tension could finally move and dissipate

This emotional work wasn't separate from the physical work—it was essential to it. Muscles that hold emotional protection won't fully release until the emotional content is addressed.

2. Reparenting Myself: Giving What Wasn't Received

My developmental trauma meant I hadn't received consistent:

• Attunement to my internal states
• Soothing when distressed
• Co-regulation from caregivers
• The experience of unconditional safety

I learned to provide these for myself through:

Inner child work Connecting with the younger parts of me that still carried unmet needs

Self-attunement Learning to wonder about my own experience with curiosity and care

Self-soothing practices Developing the capacity to regulate myself that I hadn't built in childhood

Creating internal safety Building a secure base within myself from which to operate

This reparenting work rewired the developmental patterns that had contributed to my nervous system's fragility.

3. Gentle Detoxification

Given my genetic predispositions and toxic burden, addressing the physiological factors mattered.

I learned to:

• Support my body's natural detoxification pathways
• Reduce heavy metal and environmental toxin loads
• Address viral infections affecting my nervous system
• Create conditions for cellular healing and repair

This wasn't about aggressive detox protocols that might overwhelm my system. It was about gentle, sustained support that allowed my body to gradually clear what it had been carrying.

4. Neuroplasticity: Retraining Specific Pathways

Perhaps most crucially, I learned to engage targeted neuroplasticity to rewire the specific patterns causing my symptoms.

This involved:

Identifying hypertonic (overactive) pathways Understanding precisely which neural pathways and muscles I was overusing

Targeting hypotonic (underactive) pathways Learning to wake up and engage the forgotten, sleeping pathways

Practicing new patterns consistently Giving my brain repeated experiences of more functional ways of organizing

Allowing the old patterns to release Creating conditions where my nervous system could let go of compensatory strategies

This wasn't random exercise or general movement. It was precisely targeted retraining based on understanding my specific asymmetry pattern.

The Hope for Dystonia Recovery Roadmap: Eight Steps

The journey I took—and that I've since guided hundreds of others through—can be organized into eight essential steps.

These aren't rigid stages you move through linearly. They're dimensions of healing that interweave and support each other:

Step 1: Understanding Your Pattern Mapping your specific dystonia presentation and the factors contributing to it

Step 2: Establishing Safety Creating internal and external conditions that allow your nervous system to begin releasing protection

Step 3: Releasing Emotional Charge Working with self-compassion to address the emotional content held in tension

Step 4: Reparenting and Attachment Healing Providing the developmental experiences that were missing

Step 5: Supporting Physiological Healing Addressing toxicity, inflammation, and viral factors

Step 6: Targeted Neuroplasticity Precisely retraining hypertonic and hypotonic pathways

Step 7: Integration Consolidating new patterns into stable, default ways of being

Step 8: Living From Wholeness Maintaining recovery and continuing to deepen into ease

You can explore these eight steps in detail by downloading the free Hope for Dystonia Recovery Roadmap (link at the end of this article).

The Power of Neuroplasticity: Why Recovery Is Possible

One of the most important truths about dystonia recovery is this: the nervous system is plastic.

What Neuroplasticity Means for Dystonia

Your brain knows how to learn and adapt—even as an adult.

This isn't wishful thinking. It's neuroscience. The same neuroplasticity that allowed your brain to learn dysfunctional patterns can allow it to learn functional ones.

Over six years of working with clients, I've witnessed:

• People in their 60s and 70s making significant improvements
• Individuals who thought they were "too far gone" getting their lives back completely
• Recovery happening across all severity levels when the right conditions are created

Age is not a barrier. Severity is not a barrier. The length of time you've had symptoms is not a barrier.

What matters is:

• Understanding your specific patterns
• Providing the right inputs for relearning
• Creating conditions that support neuroplastic change
• Consistent, patient practice over time

The Multifactorial Approach

Because dystonia emerges from multiple converging factors, recovery requires addressing multiple dimensions:

Physical: Anatomical issues, jaw mechanics, proprioceptive input

Neurological: Cranial nerve pathways, hypertonic/hypotonic patterns, brain organization

Emotional/Developmental: Trauma patterns, attachment wounds, emotional charge

Physiological: Toxicity, inflammation, viral factors, genetic support

Relational: Co-regulation, attunement, community connection

Identity: How you relate to yourself, your symptoms, and your healing journey

Single-factor approaches—addressing only one dimension—provide limited results because they're not working with the whole system.

From One-on-One Coaching to the Self-Healers Academy

For years, Hope for Dystonia operated as a one-on-one coaching service. This allowed me to work intimately with individuals, tailoring the approach to each person's unique pattern.

But there were limitations:

• Only so many people I could work with individually
• No community element where people could support each other
• Higher cost that made the work inaccessible to many

The Hope for Dystonia Self-Healers Academy evolved to address these limitations while maintaining the depth and personalization of the work.

What the Academy Offers

Comprehensive Pre-Recorded Course

• All the content from six years of one-on-one work
• Available at your own pace (no dripping or artificial delays)
• Covering all eight steps of the recovery roadmap
• Detailed instruction on assessment, practice, and integration

Live Coaching Calls

• Regular opportunities to refine and deepen the work
• Personalized guidance within a group setting
• Real-time troubleshooting and support

Community Connection

• Being on this path with others who understand from the inside
• Shared learning and mutual support
• Witnessing others' progress and being witnessed in yours
• Recognition that you're not alone in this journey

The Heart-Centered Approach

• Reconnecting with your body from compassion, not combat
• Understanding you're not a victim of circumstance
• Taking your healing into your own hands
• Being in the driver's seat of your nervous system's journey

Who the Academy Is For

The Self-Healers Academy is designed for people who:

• Want to understand their own patterns deeply
• Are ready to take active responsibility for their healing
• Recognize that recovery involves multiple dimensions
• Value community and shared learning
• Are willing to practice consistently and patiently
• Understand that healing is a journey, not a quick fix

It's not for people looking for:

• Passive treatments where someone fixes them
• Quick solutions or magic bullets
• One-dimensional approaches
• Purely medical/pharmaceutical management

Key Principles From My Recovery Journey

Looking back at what allowed me to get my life back, several core principles stand out:

1. Dystonia Is Learned Protection

Your symptoms aren't a malfunction or disease process in the conventional sense. They're patterns your body learned to protect you.

This reframe changes everything:

• From "I'm broken" to "I learned this"
• From "It's happening to me" to "My system is doing this for a reason"
• From "I'm powerless" to "I can learn something different"

2. Opening Is Smarter Than Fighting

Trying to overpower your symptoms with force reinforces the very patterns you're trying to release.

Opening to your symptoms with compassion and curiosity creates the safety your nervous system needs to let go.

3. Multiple Factors Require Multiple Approaches

Because dystonia emerges from converging factors—anatomical, developmental, genetic, toxic—single-factor approaches provide limited results.

Comprehensive recovery addresses physical, emotional, relational, and physiological dimensions simultaneously.

4. The Nervous System Is Plastic at Any Age

You're not too old. You're not too far gone. Your symptoms aren't too severe.

If you create the right conditions and practice consistently, neuroplastic change is possible regardless of age or symptom duration.

5. You Can Be in the Driver's Seat

You don't have to remain a passive patient waiting for someone else to fix you.

You can learn to understand your own patterns, provide the inputs your nervous system needs, and actively participate in your healing.

6. Community and Connection Matter

Healing doesn't happen in isolation. Being witnessed, supported, and connected to others on similar journeys creates conditions for change that solo work cannot.

7. Patience and Compassion Are Essential

Neuroplastic change takes time. Developmental patterns don't shift overnight. Toxicity clears gradually.

Meeting yourself with patience and compassion throughout the journey isn't optional—it's essential to success.

What Made My Recovery Possible

When I reflect on what actually allowed me to get my life back, it comes down to a few key shifts:

I Stopped Being at War With My Body

The moment I could relate to my symptoms as communication rather than enemy, everything changed.

My body wasn't betraying me. It was trying to protect me. Once I could hear that message and respond with understanding, my nervous system could begin to trust that new patterns might be safe.

I Addressed the Whole System

I didn't just work on my jaw mechanics (though that mattered). I addressed:

• The anatomical asymmetry
• The developmental trauma patterns
• The toxic burden
• The emotional charge held in tension
• The genetic vulnerabilities
• The relational patterns
• My identity and how I related to myself

This comprehensive approach created the conditions for deep, lasting change.

I Practiced Consistently With Patience

Recovery didn't happen quickly. It took time, consistent practice, and patience with the pace of neuroplastic change.

But by showing up day after day with the practices, my brain gradually learned new patterns. The old compensatory strategies slowly released. New, more functional ways of organizing became my default.

I Had the Right Support and Guidance

I didn't do this alone. I had guidance that helped me understand what was happening and what to do about it.

And as I began helping others, I saw how community, shared learning, and being witnessed in the process accelerated healing in ways solitary practice couldn't match.

If I Can Do This, You Can Too

I share my story not because it's unique or exceptional, but because it demonstrates what becomes possible when you understand dystonia as learned patterns that can be relearned.

My journey is not special. It's replicable.

If someone who spent years in bed, unable to speak, chew, or walk properly can get their life back through this approach—if people in their 60s and 70s can make significant improvements—if hundreds of people across six years can transform their experience of dystonia—then you can too.

Not because you'll follow my exact path. Your pattern is unique to you. Your journey will be your own.

But because the principles are universal:

• Nervous systems are plastic
• Learned patterns can be relearned
• Opening creates more change than fighting
• Addressing multiple factors produces deeper results
• You have more agency than you realize

This is your body. And you can do this.

Your Next Step: The Free Recovery Roadmap

If this story resonates with you—if you recognize the possibility that your dystonia, like mine, is a set of learned patterns that can be relearned—I invite you to download the Hope for Dystonia Recovery Roadmap.

This free resource provides:

• Detailed explanation of the eight steps I took to recover
• Understanding of how the Hope for Dystonia method works
• Assessment tools to begin mapping your own pattern
• Introduction to the Self-Healers Academy
• Clear next steps for your journey

Download the Free Recovery Roadmap

There's no obligation. No spam. Just valuable information that can help you make sense of what you're experiencing and understand what might be possible.

And if the Academy feels right for you—if you want to be part of a community of people reconnecting with their bodies from the heart, learning to take their healing into their own hands—you'll find information about joining there as well.