#4: Moving Ahead with Treatment - Hope for the Future

As mentioned in the last two posts, I began looking elsewhere for treatment. I  have finally decided on Dr. Joaquin Farias in Sevilla, Spain. He has already scheduled me and believes he can help. After 2 weeks of research, I believe there is no one more uniquely qualified and experienced with my condition and I totally agree with the philosophy behind his treatment. I'm reading his book which is basically histories of various dystonias and their causes and treatment, as well as doing exercises with his DVD "Playing without Practice".

The bummer is, I cannot see him until the Botox is out of my system. My treatment will start the end of January. If you are a guitar player considering Botox as a place to start, I cannot discourage you enough. It is too risky and difficult to get right, and has now put me back 3 months. 

I have been given the ok to keep teaching, and play to softly as long as I am not fighting the dystonia in any way. Easier said than done. But at least I can continue pre production for the new CD and keep moving forward in some way with the great artists we have to work with now.

This is the first day I've felt any significant emotional relief, and for that I am very grateful. I can still play in some manner, and I will get treatment with someone I believe is totally ahead of the curve, and has a solid track record of full recoveries with top level professional musicians. Being diagnosed with Focal Dysonia already, what more can I ask for?

TESTIMONIALS

Botox: not the answer to my condition

It has been 9 days since my diagnosis and first injection of Botox into my forearm. Though it is a little early to speak definitively on the subject I can say that I will not be doing it again.

First, I feel I made a mistake by accepting the consensus in the US that it was my only option. I must preface the following by saying I do not blame the doctors here, and am extremely grateful for the way they have reached out to help me. I was rushed in 3 weeks ahead of schedule and treated immediately. Their honest intentions were to help me in all ways possible within the context of their education and experience. 

That being said, the botox has now started effecting the wrong fingers, and the problem finger is still the same. My middle finger(right hand) is now having trouble keeping up with the index, and the index is slightly effected as well. The bad news is my middle finger is what saved me through re-fingering and allowed me to keep playing. My picado technique was my savior and is now dysfunctional as well. The good news is I will now be forced to rest, and to stop re-fingering which is known to cause further dystonia. It will stop taking effect after 2-3 months.

I've come to a few conclusions. This is not an exact science. I feel it is too much to ask any doctor to consistently pull this off without error. The idea of temporarily killing the very nerves that are reacting wrong to the commands of my brain does not make sense, and at best would temporarily cover up symptoms. This is not the direction I've ever looked when it comes to health care, so it does not make sense to start now.

Reflecting further on this thought, and discussing the idea with a very respectable physical therapist that works with hand disorders and musicians, we both agreed in theory(not by any evidence) that it is possible that killing these nerves that we are trying to re-train could further aggravate my condition.

And lastly I cannot get past the fact that 1 botox shot costs $1000. It makes me sick to think about it. This has nothing to do with our doctors and everything to do with our dysfunctional health care system. The priority is maximum profit, not the health of patients. The pharmaceutical industry in this country has a strangle hold on whole world. I understand the concept of recouping R & D costs, but I think we can all agree that Botox has made their fair share of profit.

This mentality gives me inherent distrust of our health care system and has always led me to more natural alternative and preventative care.

I am still taking a little more time to decide what direction I will go before I commit to treatment as I will go all the way when I do. So far Dr. Joaquin Farias has resonated with me most regarding my condition. A combination of motor re-training and understanding completely why this is happening to me. I’ll leave you with an excerpt form his book “Intertwined – How to Induce Nueroplacsticity”. I apologize for the spacing.  The PDF does not like copy and paste, which probably means I'm not supposed to. Oh well. This has me thinking in a new direction.

The hypnotizing ball

Daniel is a ping pong player, a member of his country’s national team. To the

surprise of his friends, he left his profession just when it was predicted that he would be

at the top of his career.

Daniel suffered from focal dystonia which affected the extensor muscles in his

forearm. Physical therapy treatments had provided no results.  His case included one

peculiarity: he was able to perform all the movements without holding the paddle. Even more peculiar was that he was able to perfectly perform the movements using the

paddle in the air.

As soon as a ball was bounced on the table, triggering the learned serve

response, his wrist extended uncontrollably. On occasions this happed so intensely that

he lost control and threw the paddle. 

This case can again be explained by association and highlights the importance of

context. A predetermined context existed where his reaction was learned and inevitably

produced a dysfunctional connection. These contexts could become so specific that,

varying only in small details, the system did not recognize the context, leaving it to its

own associations. All of the elements present at the time the dysfunctional sequence

was programmed should appear in a concrete order in order to create the spasticity.

In this case, the dystonia was not in his hand, but in the ball.

This clue can be used when designing rehabilitation exercises, always seeking to

establish control within contexts not associated with spasticity in order to later confront

the conflictive contexts, modifying details so as to produce less extreme responses.

STEP 2: RESEARCH

So now that I've swallowed the pill of having this condition, it's time to find out what is available in terms of treatment and long term care.

So far no effect with the botox, which I'm actually happy about as I've realized this is not the route I want to go. This simply addresses the symptoms. The idea of killing nerves in my arm and hand is too risky. I was looking to get better as fast as possible. This will now be a last resort after all other options have been exhausted.

Fortunately not all the rest of the world is obligated to think within the same box. Europe and Spain in particular have much more comprehensive research, views and approaches to the condition known as musician's focal dystonia.

Here are two places I'm looking into for immediate treatment in Spain:

Dr Joaquin Farias, Sevilla

Institut de l'Art, Terrassa near Barcelona


Another resource with lots of info including some of the doctors mentioned above and patient testimony.

A rock guitarist in Argentina who cured himself with the help of others:


Guitarist David Leisner, who also cured himself:


I'm sharing this as it is a working journal for my research as well as to provide info for any guitarists who are suffering from this condition and need another place to look.

If you feel compelled in anyway to look further into this for us guitarists, please feel free to email me your thoughts at eric@flamencoseattle.com

Abrazos-  E

FOCAL HAND DYSTONIA – MY GREATEST CHALLENGE

Today I received the most devastating news I’ve had to face as an artist. I’ve been diagnosed with Focal Hand Dystonia. FHD is a neurological condition that results in decreased fine motor coordination/control due to degradation of the representation of the hand on the brain’s somatosensory cortex. Though rare within the general population, it is more common amongst dedicated artists that practice the same fine motor skills for insane hours, years on end the way I have with flamenco guitar.

Basically the map from my brain to my right ring finger has lost definition and degraded to into loss of coordination, accuracy and speed. It simply is not working anymore as a picking finger. This has led to every technique being effected, and has created intense tension and pain throughout my body.

The truth is, I have been fighting this for 2 years not knowing what was wrong with me. None of the maestros I’ve studied with in Spain could see anything in my technique that was causing this, so I just powered through it with more practice. With FHD, this only compounds the problem. I had tendonitis and carpal tunnel symptoms in my 20’s and learned how to balance rest and improving technique to overcome those challenges. I tried to apply this to my ring finger to no avail.

The last year in particular has been extremely frustrating in a way that I’ve only told a few close to me. As a performer, your job is to make everything look easy, so I’ve been covering and masking these problems the best I can by re-fingering my arpeggio technique and relying on my performance ability. On this last tour things came to a head as the stress of my condition nearly shut my whole hand down. I could barely play my guitar by the time I got home. Obviously, my world has been shattered by this and by the diagnosis.

Why am I saying this publicly? Frankly, it's not really my style. As a performing artist, my privacy has always been important. My dear friend Chip Hanauer, the champion unlimited hydroplane racer was diagnosed years ago with focal dystonia in his vocal chords. He was unable to speak for 3 years before he was diagnosed. He told me that telling his story helped others get diagnosed and treated for the same condition. So I am going to share my journey with the public in order to help guitarists who may have this condition and have no idea what it is or how to deal with it. Every year I hear horror stories from Spain and here about guitarists I look up to losing the ability of one finger or one technique, some quitting altogether. I have to wonder how much of this is undiagnosed FHD.

THE GOOD AND THE BAD

This of course could not come at a worst time. I’m working with the level of artists I’ve always dreamed of.  I feel I’m composing my best music now and the show I’ve always wanted is taking shape and nearly ready to go. My wife has reached new levels in her art as well and we have opportunities in front of us for 2013 that we could not have imagined a few years ago.

Unfortunately there is no cure for this condition at this point, but there are artists who have overcome this through focused physical and neurological therapy as well as experimentation of botox injections directly into the problem muscle and nerve area. This has helped my friend Chip to regain his voice and live a normal life again. I pray that it will do the same for my hand. Today I had my first injection. In the next week one of three things will happen:

1. No effect, need to try a stronger dosage next visit with my neurologist. 

2. Things start to improve and I reprogram the connection on my right ring finger and build my technique up again. This of course is the best-case scenario.

3. Near complete paralysis of any picking motion in my ring and pinky finger for 2-3 months. While it would not be permanent, it would certainly bring my career to a screeching halt for a bit. We would then try again with a smaller dosage.

If this sounds horrifying to you, you can imagine what I am feeling right now. Guitar is my life. There has never been anything else for me and I’ve never considered another option.

I’ve given up everything for it. I’ve been poor, homeless, and hungry enough to steal food on my journey. I’ve had many failed/doomed relationships because the selfishness it takes to do what we do is too much to ask of any woman. All of this while constantly being told by the small minded that I should think about getting a real job or go back to school. I kept moving forward and never looked back.

Now I am 14 years away from the last shitty job I will ever  have to work at and have the luxury of being a full time artist. I can say with total honesty that the rewards of chasing your dream and living the life of an artist far outweigh the challenges I’ve faced.

But now comes my greatest challenge. Facing the prospect of losing everything I have worked for. As devastated as I am by the full realization of my condition I can say this:

I will overcome this condition one way or another. I will continue to compose, record and perform no matter how hard it is. I will find a way to be healthy enough to move forward, no matter how long it takes. I will focus on my physical, mental and spiritual health in a whole new light. While I do this, I will share my story for the artists who will face this same condition to hopefully help them find their way.

I thank God for my wife. She is the best thing that ever happened to me, and one of the reasons I will be able to beat this. I have a loving family and amazing group of friends that will be there for me, and for that I am truly blessed. The power of their prayers and support will help give me the strength to move forward.

To the fans and supporters who have been there for everything we have done over the years, I thank you for your support as well and promise the best is yet to come.

Sincerely,  Eric “El Comanche” Jaeger