Welcome to Dystoniahelp.org

Our Mission

Our mission is to improve long-term patient outcomes in people with adult-onset focal dystonias or early Parkinson’s Disease predictors.

  • Adult-onset Cervical Dystonia, Musician’s Dystonia, and Writer’s Cramp.
  • Early Parkinson’s Disease Predictors:
    • Violent dream kicking (RBD): 80-90% conversion rate to PD
    • Reduced sense of smell (hyposmia): 3.8x risk multiplier for PD, Alzheimer’s risk 
    • Autism Spectrum Disorder [1]
    • Unexplained finger twitching (One of Michael J. Fox‘s first symptoms)
    • Blood pressure or heart rate control issues (dysautonomia) 
  • Others who are interested in improving their neurological health, like reducing risk of developing Alzheimer’s disease..

Cervical Dystonia, Musician’s Dystonia, and Writer’s Cramp

Cervical dystonia (CD) is a rare disorder that causes uncoordination or unintended contractions of muscles in the neck.  “Dystonia” technically means sustained contractions and dyskinesia means repetitive motion, but these can occur in the same individual and are thereby both labeled cervical dystonia.  Cervical dystonia can be extremely painful and disabling. 

Symptoms of adult-onset cervical dystonia typically begin between ages 40 – 60, and progress over 3 – 5 years before reaching a plateau.  Early muscular symptoms may include neck weakness and pain.  Cervical dystonia may appear to be a muscle conditions, but is actually a neurodegenerative condition of a part of the brain called the basal ganglia.  The basal ganglia, among other things, is responsible for coordinating complex motions using dopamine, GABA, glutamate, and other neurotransmitters. 

Adult-onset cervical dystonia can have many causes that are difficult to pinpoint in an individual.  Adult-onset CD is therefore usually diagnosed as idiopathic, meaning no known or provable cause, and treated symptomatically.  The mainstay of symptomatic treatment is quarterly Botox injections into the affected neck muscles, blocking acetylcholine and reducing the brain’s ability to control those muscles.

Other focal dystonias include musician’s dystonia and writer’s cramp.  Musician’s dystonia occurs in the most-used muscle group (typically one hand) of professional musicians.  Writer’s cramp occurs in the most-used hand of professional writers. 

Cervical dystonia is extremely rare, occuring in only 1 out of 3500 people.  However, musician’s dystonia is much more common (roughly 1%) among professional musicians than cervical dystonia is in the general population.  This may seem odd at first but there is scientific evidence that repeated motor activity can lead to localized manganese deposits in the basal ganglia.  

As with Parkinson’s disease, gut issues, reduced sense of smell, and sleep issues can often occur years before the motor symptoms develop.   

In this website, we explore ways to recognize and reduce potential drivers of neurodegenerative disease, as early as possible.  These include specific toxins, biochemical deficiencies, dysbiosis, and disturbed sleep.  We often use Parkinson’s disease research as a proxy, since it is much more plentiful than dystonia research.  Parkinson’s disease is closely related to dystonia, generally attributed loss of dopamine-producing cells in the basal ganglia.  

Note: The focus of this website is on reducing risk factors such as those marked in green above.  We will also discuss evidence for substances that show potential in breaking down alpha-synuclein clusters, a common progressive factor in Parkinson’s Disease.

Dystoniahelp Founder’s Story

In 2019, I was completely disabled by an excruciatingly painful case of Cervical Dystonia. I went through “the system” and ended up at a major neuroscience research hospital.  They offered me a lifetime of Botox injections for symptomatic relief, at $30,000 per year.  I accepted a trial injection to kill my muscle signals because at that point I was only able to get out of bed long enough to wolf down my meals, and I was barely able to shower, sitting down.  The first Botox injection sent me to the emergency room, and did not relieve the muscle contractions at all.  These were the darkest days of my life. Secretly, I wanted to die.

While lying in bed all day, I did a lot of research.  My condition was so rare there were no experts.  So I signed up with a major research hospital to get a costly second opinion.  After a long time working with them collecting data, they could not find an expert on how to safely reduce the high levels of manganese in my blood or what was the provable cause of my dystonia.  They refunded my payment and within the system, I was back to square one.

Two years later, I am medication-free and pain-free.  I have resumed almost all my normal activities, limited by COVID.  But COVID is truly a breeze compared to being stuck in bed with pain all day!!  I have a new lease on life and am making the most of it.

The reason I have regained my health enough to function normally is that my wife took me to see a naturopathic doctor (ND) when my pain first became bad enough to affect my work, around 6 months before the Botox injection.  To some people, NDs are not “real” doctors like MDs.  But in our state NDs are required to take four years of college focused on how to maintain systemic health and naturally support a body’s normal digestion, detoxification, immune, sleep, and neuroprotection systems.  They are licensed and allowed to order lab tests, including ones that are almost never ordered or even available within “the system”.  In the US, when these tests are at one of the nationwide blood-draw labs, insurance will usually cover it.  If it is from a specialty lab, insurance will debate about it to reduce their costs, but it will still be cheaper than the nationwide lab. 

My insurance used to cover NDs but no longer, so costs can be an issue.  But it’s not much more than the deductible I would have had to pay with quarterly Botox injections anyway.   

It took a whole year of painful detox and addressing my systemic health issues, with two NDs and a holistic MD, to get to first signs of remission.  So patience is a must.  It was hard work and I spent a lot of time getting lab tests, taking supplements, doing saunas, improving my sleep, and getting IV chelation treatments.   

Please note I strongly believe that NDs and MDs can work hand-in-hand to help you – there are good, smart people in each field and you have to find the right ones for you.  NDs will help you restore systemic health and MDs will diagnose and treat specific diseases.  It is important to know whether you have an assignable cause of your condition, such as a tumor, that needs treatment.

I hope my story and research can help you find a simpler path to remission.  

Case Review

My friends often call my recovery a miracle.  My wife, who found all of my alternative healthcare practitioners, calls it love and hope.  I’m not going to argue with either interpretation! But I will share the story of the traditional (IV chelation, Botox) and alternative medicine (“Natural Cures”) routes I took, along with my symptom progression and remission.

Research Overview

As it turns out my recent research indicates some of the things I did probably weren’t necessary.  But it also turns out that my NDs were absolutely right – I needed to address my systemic issues such as vitamin D deficiency and dysbiosis no matter what.  A 2021 study shows that at 51% of CD patients have a specific type of dysbiosis, resulting in more than 200 significantly altered blood biochemicals [3].  This seems hardly fixable using drugs!  Also, vitamin D deficiency has been found to be common in almost all neurologic diseases affecting motor control, and also in gut health issues.  

Since research usually focuses on proving one specific hypothesis or variable change at a time, I have enlisted a group of leading researchers and practitioners to put together a more cohesive story on how to address systemic health, and finding the right practitioners for that need.

It is important to note this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.  This content is for informational and educational purposes only, so you can understand the importance of systemic health, and put effort into finding the right practitioner for your systemic health needs.

Another positive note is that genetic defects which can single-handedly cause CD or PD are extremely rare.  Instead, it is much more likely that normal variations in genetics combined with toxic exposures and antibiotic use caused our condition.  And we can fix many of those factors.  For example, in older research, my high manganese levels would be predicted to always result in a progressive neurodegenerative condition. But changing the factors that caused my CD allowed my body to detox and heal.  

CD and PD as Expressions of Systemic Disease

I created the above model to illustrate the framework of my research effort.   The huge database of the USA National Institutes of Health was the source of most of the information on this website.  However, note that most scientific research has several limitations in terms of how it can help us now:

  • Only one variable is tested at a time.  With systemic disease, there are many variables which may need to be adjusted at the same time or the body can self-adjust back to near where it started. 
  • Treatments are usually tested for a limited time frame, often two months or less.  Remember it took me a year of treatment to get my manganese levels down enough just to achieve the first signs of remission.  So some of the treatments that only work “some of the time” in research may work much better over a longer period, or when other variables are adjusted as well.
  • It often takes 10-20 years for research to translate to changes in clinical practice, or even longer for public policy changes. My ND was up on the latest research so that helped a lot.

Dedication

This site is dedicated to my wife, always my beacon of light and hope, who helped me through the darkest times.  This site is also dedicated to my children, for their strength and loving throughout this ordeal. 

Because of the support of my loved ones, this website is free.  Please comment or just say “hi!”

References

1. Starkstein S, Gellar S, Parlier M, Payne L, Piven J. High rates of parkinsonism in adults with autism. J Neurodev Disord. 2015;7(1):29. doi:10.1186/s11689-015-9125-6

2. Murueta-Goyena A, Andikoetxea A, Gómez-Esteban JC, Gabilondo I. Contribution of the GABAergic System to Non-Motor Manifestations in Premotor and Early Stages of Parkinson’s Disease. Front Pharmacol. 2019;10:1294. Published 2019 Oct 30. doi:10.3389/fphar.2019.01294

3. Ma L, Keng J, Cheng M, Pan H, Feng B, Hu Y, Feng T, Yang F. Gut Microbiome and Serum Metabolome Alterations Associated with Isolated Dystonia. mSphere. 2021 Aug 25;6(4):e0028321. doi: 10.1128/mSphere.00283-21. Epub 2021 Aug 4. PMID: 34346706; PMCID: PMC8386414.

4. Huang Y, Liao J, Liu X, Zhong Y, Cai X, Long L. Review: The Role of Intestinal Dysbiosis in Parkinson’s Disease. Front Cell Infect Microbiol. 2021;11:615075. Published 2021 Apr 22. doi:10.3389/fcimb.2021.615075

 
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