Living With Focal Hand Dystonia

Living With Focal Hand Dystonia

Here is how I took my life back living with  focal hand dystonia symptoms.  After it was mysteriously almost taken away.

With a once promising music career in ruins and my sanity pushed to the edge, this is my untold true story of how I was able to comeback and make a great living by reinventing myself. 

Wanna Know How I Gained My Life Back?

If you are a musician or an artist, or have ever been great at something you were extremely passionate about and then had it mysteriously taken away, my true story you are about to read of living with focal hand dystonia symptoms might hit you gut-wrenchingly hard to the core.

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These are colossal life challenges that will lead us to the 5 Stages of Grief and Loss.

But there is hope, my friends.

Remember. There is always hope.

There are affiliate links within this post. What this  means is that if you decide to purchase anything through one of my links, I'll be rewarded with a small commission at absolutely no extra cost to you. This small commission helps me run and maintain my website.


It Happened One January Morning

focal hand dystonia curling of fingers

It was a January morning in early 2010 when I woke up, picked up my Fender Strat as I would do every morning for 25 years, and I simply couldn’t play the strings the same way.

I felt no pain. But something just wasn’t the same.

My life changing arc all began in a very subtle way.

In my case, it was a slight involuntary “flying out” of the pinkie of my left fretting hand. Soon after, the middle finger of the same hand also began to curl inward. Over time, even the simplest open guitar chords became nearly impossible to play.

Focal hand dystonia flying out of pinkie

Where's The Doctor?

During the course of the next 7 years, my professional music career laid in ruins, as I went to see countless medical doctors, acupuncturists, hand specialists, surgeons, and functional medicine specialists.

You name the specialist, and I likely went to see them.

However none, not even one, had any answers for me.

It was only through pure serendipity and then by first recognizing then seizing a timely and unique opportunity that I somehow would be able to gain my life back from focal hand dystonia.  (Here's access to this Amazing Community) 

What is Focal Hand Dystonia? 

Bar chords with focal hand dystonia

Focal hand dystonia is a debilitating neurological disease that affects mostly professional musicians and artists. It can affect all kinds of musicians namely: guitarists, pianists, horn players, woodwind players, drummers, etc. It usually affects all musicians that require repeated and intricate hand and lip movements.

This disease can also affect other professionals who require precise muscular control through highly practiced movements. Such repeated and usually rapid movements are conjectured to be a root cause of focal hand dystonia.

However, focal hand dystonia is strikingly most common in musicians and artists than any other group of professionals, including dentists, surgeons, and writers.

Artists painting with focal hand dystonia

Therefore, focal hand dystonia is a disease can appear out of nowhere, as it did for me.

Symptoms of Focal Hand Dystonia

These are the 4 Main symptoms of Focal Hand Dystonia:

  • It can cause subtle loss of control while playing fast passages
  • It causes a lack of precision
  • It can cause fingers “sticking” to keys 
  • It can cause fingers to involuntarily curl in or fly out on either your fretting or picking hand

What makes this silent dream killer so insidious is that it is totally painless.

And it is only present in the context of specific tasks. What do I mean by this? 

For example, my fingers do not “fly out” when I am playing pool or handling manual tools, but those same fingers will “fly out” when I am playing guitar.

Focal hand dystonia side affects

Strange stuff, right?

This is the disease that ruined my high-earning music career, a career in performing live music that for so many years I was so passionate about. 

Due to its unknown origins, focal hand dystonia is a career-killer of musicians that remains a mystery.

And later I would find out it currently has no cure.  

Wanna Know How I Gained My Life Back?

Life is Not Always in Our Control

Dark days dealing with depression

In life we occasionally encounter situations far beyond our control. Woes we simply cannot ever prepare for or overcome that make us question the core of our existence.

Yes, I realize some out there may say or be thinking this is was not a life-threatening illness. Some might say focal hand dystonia is not cancer, or a disease that will leave you in a wheelchair.

Tell this to any extremely talented and dedicated artist or musician who put their entire lifeblood and dedication into developing the craft they’ve loved for so many years, and most will tell you this is tantamount to a life-ending situation. 

Broken heart from focal hand dystonia

It's How We Deal with The Challenges

Many of you out there deal with such daunting physical and mental challenges every day.

I cannot ever even begin to imagine how you wake up every morning and summon the courage to brave the light, while also trying to succeed in your own career and personal lives.

To all my new friends out there, I have the greatest respect and admiration for your amazing courage and unfaltering resilience. You are my supreme inspiration.

Yes, I have had my share of challenges too, perhaps not to the same extent as some of you may have. Believe me I have found myself down in the trenches, climbing so high to the summit only to fall back into the deep abyss of life, arms flailing helplessly.

Take away the paint brush forever from the artist, or the guitar away from the musician and he or she will go raving mad. This is exactly what happened to me. I soon became mentally despondent and near the end.

Then one day as a result of my quandary, I found myself searching for divine providence.

Searching for divine providence

Confronting that deep abyss, here goes the rest of my story…..

My Focal Hand Dystonia:  5 Stages of Grief and Loss

5 Stages with focal hand dystonia

Living with my focal hand dystonia presents ongoing challenges that continues even to this day.

Once upon a time for many years, I was a well-paid and sought-after professional guitarist and band leader. I ran one of the most exciting in-demand party bands in New York City.

Then I almost lost everything.

That happened one January morning when I contracted this mysterious hand disorder.  It's truly amazing how I have comeback from the brink of disaster after losing my once well-paying music career.

Life happens. Conditions change and so do one’s predilections. 

I am so grateful, and I believe I have been truly blessed to have seen the opportunity that eventually led me to turn my life around and become the successful online marketer I am today.

A successful marketer today having been blessed with the ability to generate multiple passive income streams.

However, it wasn't always this way.

I Was Once a Gifted Musician

For the majority of my life, I have always been considered by my peers as a brilliant guitar player.

I have always carried a great sense of pride achieving a very high level of playing through over 10,000+ hours of practice. Once I could play all styles of music i.e., rock, jazz, classical, fusion, rhythm & blues, funk, etc. with equal facility and proficiency.

And as a song writer, I have composed over 130+ original songs on guitar and piano.

Off the Hook band photo during happier days

For the previous 14 years, my band Kaju’s Off the Hook had been a prime time in-demand party band for hire blessed having performed over 1400+ shows, including over 400 private events.

That’s the good news.

Then One Day Life Came Crashing Down...

One morning in January 2010 I woke up and noticed I couldn’t play the strings the way I used to. Overnight, my left ring finger and pinky could no longer bend, and both fingers would “fly out” uncontrollably. WTF!

That’s when during that first catastrophic month I experienced the 5 stages of grief and loss:  denial, anger, bargaining, depression, and acceptance.

5 Stages of Grief

Denial and Anger:  Focal Hand Dystonia

Well, actually the first two.  Denial and anger.

Over that first horrible month, my mysterious malady continued on a daily basis without any sight of improvement. Forget about even not playing the strings like I used to, I couldn’t even play the most basic open chords on guitar!

First I was in utter denial. As a result of such denial, I soon became completely stunned. This led to me walking around for one week in a fog going about my business as if nothing was wrong.

By the second week, I woke up one morning and became totally enraged.

Feeling undeserving of my plight, I was engulfed in anger.

My anger toward the world sent me on an unrelenting dire quest to see as many different doctors and hand specialists over the following 9 months (imagine being angry for 9 months!).

They all performed a wide variety of x-rays and nerve tests. Surgery was ruled out, and none of the various tests ever yielded a conclusive diagnosis.

By July, I went to see a recommended acupuncturist for a total of 4 sessions. This didn’t help either. 

Dealing with the grim news of focal hand dystonia

The Aftermath of Focal Hand Dystonia:  The Grim News

Then late 2010 after witnessing additional bizarre changes in my hand, I spent countless hours of exhaustive internet research.  This would lead me on a path to find a controversial specialist at Columbian-Presbyterian Hospital in rare hand disorders. Desperate and searching for answers, I made the appointment.

Within 30 minutes upon my arrival after giving him my complete detailed history, this controversial doctor offered his diagnosis of my malady.

That day on September 15, 2010 I was told officially I had a rare neurological disease called focal hand dystonia.

Bargaining:  Stage 3 of Focal Hand Dystonia

Bargaining: Stage 3 of Focal hand dystonia

For a short two-week period of time after my diagnosis, I went through the bargaining phase. I blamed myself for my own malady, citing my arduous practice sessions from late 2009 as the cause for my disease.

Practice in recent years had been sporadic and intermittent for me.

When you have been playing for many years only minimum practice is necessary.

There were days I would hardly practice for months (other than performing with the band live) followed by short bursts of heavy 3 hour per day sessions.

Second Guessing Oneself:  Why Focal Hand Dystonia?

Near the end of 2009, there was an unusual three month period where I was practicing lots of complex guitar melodic patterns, scales, and riffs with the metronome. Soon I was working these practice exercises up to break neck speeds, playing in tandem with You Tube videos by speed demons i.e. Paul Gilbert, Joe Satriani, Paco De Lucia, etc.at times reaching 184 rpm’s on the metronome.

Immediately I began questioning and blaming myself with “What if this” or “What If that”.

For instance, I would say “What if I didn’t subject myself to those rigorous speed practice sessions and exercises, could I have averted this horrible hand disorder?” 

Depression:  Stage 4 of Focal Hand Dystonia

Depression: Stage 4 of Focal hand dystonia

By the beginning of October 2010, my world was rocked and steadily collapsing inward around me.

Quickly I became severely depressed over my hand disorder. Compare this to an athlete or a writer. How would such an athlete runner or writer feel if he or she could no longer have the facility to run without a limp or the ability to see the written page?

However, I was lucky. Due to unique opportunities created, not everything was gloom and doom.

To cope with my depression, fortunately I became involved in several projects which became necessary diversions. Several of these “diversions” were fortunate accidents by themselves.

Gospel Fest and Television

These were performances on the short-lived “Karaoke Battle USA” ABC-TV show in 2011, and singing and playing guitar for the “Don’t Give Up Gospel Choir” from Japan to raise funds to support the tragic tsunami victims of March 11, 2011.

Our group commanded an outstanding performance in front of a crowd of 20,000+ strong at Gospel Fest.

That was one electrifying concert at the Prudential Center under the direction of Danny Eason where we opened for legends Kirk Franklin and Donny McKlurkin.

The Don't Give Up Choir from Japan

Charitable Work and Activity

As I’ve always cherished helping others especially the ones most in need.

Soon I became involved by contributing my time and efforts to several philanthropic activities for the Red Cross and the Memorial-Sloan Kettering Cancer Center also provided great comfort and solace for me.

There were two radio interviews on WGBB with Lou Telano covering “Karaoke Battle USA” and the Japan choir that provided a necessary distraction.

Kaju visits crowd of 20,000 at Gospel Fest

A Passion That Never Dies

My depression eventually turned into apathy. 

By 2012, Off the Hook had an old website hosted for several years on Network Solutions and I let it go. Whatever prior interest I maintained with band marketing and promotion slowly waned.

However, my overreaching passion for live music performance never died.

That’s the only reason why the band continued playing regularly despite my hand disorder, at least on our regular monthly club date. It;s the same passion which still gives me the motivation and perseverance to drive forward.

By this time the group took a long hiatus from performing special private events save a few. 

Acceptance:  Stage 5 of Focal Hand Dystonia

Acceptance: Stage 5 of Focal hand dystonia

Facing my new reality, I continued to trudge forward playing every gig using only “2 to 3 fingers.” This exercise became extremely frustrating for me.  In fact, at first it seemed to be an exercise in futility.

As a strictly-trained guitarist who played one finger per fret “by the book”, I was at first very resistant to accepting my new found condition or to changing my playing to unconventional fingerings.

Eventually however, in order to get through every performance I had to change the left-hand fingerings on practically all the songs we performed.

Overcompensating for my new limited status as a guitar player soon became the norm.  Slowly I began to make adjustments while living with focal hand dystonia.

I had reached a point of acceptance.

Gigs started to get better and slowly were becoming fun again.

Through my process of learning to accept, open-mindedness, and self-discovery, in time I turned toward Eastern medicine. To this day I continue to be treated by the Hands of the Master. 

Kaju performing at the Waldorf Astoria

Coming Full Circle!

In 2016, Kaju’s Off the Hook performed our annual Waldorf Astoria private black tie event for Young Audiences on the third week of November. Then on December 9, we performed a phenomenal show at Capitale NY in front of 1600+ frenzied guests and completely knocked it out of the park!

This was a complete breath of fresh air. I’d come full circle!

That’s when I decided it was a New Year, and on January 1, 2017 after not having an active website for almost 4 years, I started to build our new band website. My new site was “completed” on January 18, 2017.

Wealthy Affiliate: The Best Online Marketing University (Hands Down!)

Wealthy Affiliate logo

Soon thereafter, I would “stumble” upon an amazing internet marketing community called Wealthy Affiliate. Almost immediately I knew this was “my new home”.

After doing very thorough background research and reading review after review, I realized what an amazing opportunity this platform would be.

Here was a community of 800,000+ worldwide members (today there are over 1.5 million worldwide members); the training was voluminous, and was more comprehensive and thorough than any I had ever seen online.

Wealthy Affiliate a Get Rich Quick Scheme?  Not!

This was not a “Get Rich Quick Scheme”, and shortly after joining the community as a FREE member, I quickly noticed how highly interactive this unique community was and how genuinely helpful they were to each other.

Seeing a great opportunity, I signed up as a premium member and immediately hit the ground running. Excited by this new adventure, I immersed myself in what I consider hands down the Best Online Marketing University.

Wealthy Affiliate's great fundamental training consists of the fundamental Online Entrepreneur Certification Course (OEC) and Affiliate Bootcamp Couse. Best of all, I supplemented my learning with the free weekly video training on a wide variety of topics by their Head Guru Jay Neill. 

Now An Ambassador for 400 Days

After studying and applying what I learned over 90 day period, I learned the secrets of multiple passive streams of income. By my third month, I became an Ambassador, one of the Top 25 of Wealthy Affiliate.

Soon I was applying these closely guarded secrets, and after a few months I began earning a passive stream of income. I was ecstatic! 

Within 2 additional months I was able to scale up my business, and began earning multiple passive streams of income in affiliate marketing.

Now I am a Wealthy Affiliate Ambassador for 444 days and counting. And I continue to help and teach others while earning a great passive income.

Wealthy Affiliate has truly been a  real life-changer for me.

Experience Wealthy Affiliate

Now I teach others to do the same.

And I would love to teach you.  By giving back.

I’d come full circle, from a music career in ruins to the freedom of a digital nomad lifestyle through generating a great passive income.

Life is sunny again!  

Thanks so much for reading my improbable comeback story!

My improbable comeback from focal hand dystonia.

Onstage view of Prudential Center at Gospel Fest rehearsal

Let’s continue the conversation. I would Love to invite you to share any comments below.

Please share the Love….

Hit the “Like” button below if you enjoyed reading this article.

Cheers,

Kaju

About the Author

KAJU is the band leader and founding member of OFF THE HOOK, one of the premiere dance party bands in the New York Tri-State Area. After contracting a mysterious hand disorder, Kaju now writes to help other musicians and artists deal with disabilities. Currently he is a Full-time Affiliate Marketer and 1-on-1 mentor at Wealthy Affiliate, a community that can help anyone start an online business without prior experience. This is where he teaches others how to make a great passive income. Read more about his story here!

  • Hello, Kaju,

    This is a deeply moving story of sorrow that turned into triumph.

    We cannot even imagine the self-realization of not being able to play your instrument! Life-changing and devastating. We take our hands for granted and that they will always do what we want but when these ‘tools’ malfunction on us, it is bad, to say the least. In your case, even more so when your hands created your music which was also your livelihood!

    You inspire us with your coming ‘full circle’ and finding an alternative path, as you slowly healed and retrained yourself.

    Wealthy Affiliate is by far the best platform there is, as we too have discovered. It is a great place to learn and to engage with a global community.

    We know that other musicians who may be struggling will learn from your experience and realize that there is a light at the end of the tunnel.

    Colette and Philip

  • Kaju says:

    Thank You so much for your continued inspiration Colette and Philip. We all have our challenges, and we all need to find ways to adjust and move forward.

    I hope others will follow my lead, and learn that there is a great life at the end of the tunnel beyond unexpected limitations, and I want to show them there is always hope.

    No doubt, Wealthy Affiliate is by far the best platform for learning how to make money online. Hands Down.

    All the Best,
    Kaju

  • Kaju! This story is filled with amazing light and inspiration. Is there a cure? I am a nurse who performs specialty infusion servcice for people with rare neuromuscular disorders. Research is my passion, hence meeting you through marketing research. Your story hits home and breaks my heart. The sadness lends to beauty like a Brazilian Samba song echoing in the breeze.

    I remember getting pistol grip from building boats at Bayliner U. S. Marine. It is a type of tendonitis from the repetitive motion of using tools. My middle finger on my right hand was stuck shut every morning.
    Well, the new program we started warms up with stretching and breathing exercises prior to getting started at work. It reduced injuries and brought the team together.
    I have been researching how to heal nerve cells, and science is rapidly advancing in this arena. I think if your arms fell off you would still be a hero and musician.
    I am very glad you came to Wealthy Affiliate. And sorry for your suffering. It is catastrophic to revamp according to unexpected circumstances. Like Will Smith said, it is not our fault but definitely our responsibility to overcome.
    My mind is swimming with thoughts to share of my research in pursuit of scientific understanding and innovation.

    I stumbled upon a protocol, involving mitochondrial biophysics. The idea of using light and oxygen therapies, as well as boosting the action of breathing on a cellular level. In the power house of cells.
    I have also been researching immunoglobulins and mesenchymal cell therapies. As well as pharmacogenetics.
    One more discovery and then I will rescind from my nerd forest before you follow me in too far. Scientists looked for an antihistamine to help repair nerves. They tried thousands and one stood out as promising. It is called clemastine fumarate that showed to improve the nerve pathways to the optic disc. I wonder what would happen if they used this in an infusion.
    Along with the specialty infusions, I do clinical oversight for facilities housing people with mental health disabilities. It is people like you who break the stigma.

    Paying it forward and charity is healing, and the reciprocal effect is the triumph of good.

    On yet another plane, I do medical-legal research as a legal nurse consultant. My calling helps attorneys and companies to improve and uphold standards of care.
    Your story has called my heart.
    Thank you for your work, and every drop of music you put into the oceanic symphony of the world. Please let me know if I may be of service to you.
    Sincerely,
    Nurse Becca

    • Kaju says:

      Nurse Becca, you have an amazing background. Thank You for sharing this with me.
      There is currently no cure for focal hand dystonia, only “management techniques”, I have tried everything from botoxin injections from one of the foremost specialists in the country for one year (the “gold standard” for managing focal hand dystonia), to functional medicine, to Reki, to acupuncture, and other Eastern medicine techniques (read my “Hands of the Master” post).

      Nothing has ever brought back the facility I owned before the occurrence of this disease. I’ve had 4 EMG’s; the last one in 2015 (I was stuck with needles in my hands, arms, and upper back back area where electrical charges were sent in me for 30 minutes) actually caused me to gain a 20-25% improvement in movement within 2 days (more than I had in the prior 5 years), however the hand specialist one week later denied the EMG had anything to do with this improvement. This improvement lasted for 3-4 months, then I reverted back to my prior baseline status. All follow-up only left more questions, never any answers.

      So I continue to march forward and continue to play and deal with this everyday, I “get by” but I am shell of my former self. The masterful guitarist I once was.
      Thank You for your kindness and concern.

  • Jim says:

    I now have a name for what ails me, Kaju! Focal Hand Dystonia!

    In my youth, I was originally a professionally trained accordionist. My abilities – believe it or not – was approaching those of my idol, Myron Floren, who rose to fame as a member of the Lawrence Welk band. Our polka band played at numerous events throughout the Midwest – but, after about 15 years – my skills began to diminish. No matter how much I practiced, my nimble fingers that never missed a note started becoming clumsy and started missing keys.

    My polka band was dissolved – and, I switched to guitar.

    At first everything went pretty well. After some years that saw 3 to 5 hours of practice a day, I was able to fret some of the most complex bar chords you can imagine – stretching out with my pinky and ring fingers to capture insane distances over the neck of my classical guitar.

    Then, my guitar playing changed – just like my days with the accordion. And, it didn’t happen to just my pinky and ring fingers – it hit my index finger, too – making it next to impossible to execute a crisp and clean bar chord of any kind.

    But, just like you, I adjusted. Now, I play open chords only – no more bar chords. Most of my chords are 2 or 3 fingers – and I stick to the keys of C or G.

    So, I’ve become a “pick-and-grin” guitarist – playing simple songs – at the campfire of my choice.

    But, I digress.

    Your move into this Wealthy Affiliate thing is something I hadn’t thought of. But, you have piqued my interest – enough for me to further research your website and see if this might be a road that I could follow to success. I’m sure that as I follow your success story, I will have many questions – so, be prepared!

    😉

    Jim