3 weeks in.

For those reading this blog that are not facing the challenges dystonia presents,  or not close enough to take a real personal interest, I understand that this journal may sound self indulgent, or uninteresting in the sense that I am all consumed with recovery. I believe it is the only way to get past this condition. What is the biggest challenge of my career may seem like nothing to someone else. That's ok. This blog is not for them. This is for those who will have to face this nightmare, and those who already have. This is all about the journey to recovery, not the simple before and after video that will be made later. As flamenco's popularity continues to grow in the US, so will the amount of guitarists who have to face this. In Spain it is not uncommon unfortunately. 

Wednesday, Feb. 20: After arriving home to Seattle, and getting up early to do my daily rehab, I realized it's only been 3 weeks since my first treatment with Dr Farias. It feels like it has been 2 months.

The nightmares were pretty bad till a couple days ago. Almost every night. I was told that this was to be expected, but it sucked none the less. The brain is being forced to re learn how to control my hands and behavior, rehabilitating from a dystonic state, and it's fighting back.

The last week or so has been very difficult. I've been struggling with the exercises and playing in general. I've not been able to get to that same place I was on the 2nd day when we made the big breakthrough. 

As you move forward day to day, you have to fight the fear that it is not going to work, as it can become a self fulfilling prophecy. The brain will do whatever you tell it to. While I do my best to control the negativity and unrealistic expectations, what I learned seemed to be regressing the last week and I've been trying to figure out why. 

Today I may have found a way of understanding this. In preparing to go to Spain for treatment, I had to get in a certain mindset. A combination of faith in my decision and a mental determination that at a minimum, I would be able to clearly see a route to recovery before I returned, no matter how long it took after. I was able to achieve that by the 2nd day. Perhaps I had not really prepared for beyond that, as it took everything I had just to get there. 

That 2nd day, I played things I had not in over a year. I even played some things better than ever at an extremely soft volume. It was almost easy. I believe my problem now is I went from focusing 100% on the rehabilitation to putting some portion of my focus into being able to play well again. These are things we talked about, but there is no way to assimilate it all in 6 sessions. In my case, I have to almost "not care" in order to get better if that makes any sense. I need to re adjust my mindset. 

Because focal dystonia is a neurological disorder, your mind comes into play. The tension, anxiety and fears it creates are an important part of rehabilitation. There is no magic pill or shot that can fix this. It takes a totally holistic approach to beat it. Your brain, mind, body and spirit all have to work together to heal. This is why it was not possible to get adequate treatment here in the US under one doctor or system. 

Dr Farias in my opinion is more that a neuroscientist, biomechanic or the sum of his many credentials. He is a healer, or more importantly, a guide who can show you how to heal yourself. What he teaches allows you to continue expand your understanding beyond the sessions and find creative ways to challenge your particular issues and overcome them. This is unique. 

This form of rehabilitation has to be the most challenging, because it boldly goes after a full recovery, not a symptomatic coverup. On top of that, you have to take 100% responsibility for your own recovery. Many fail not because it doesn't work, but because of what it takes to make it work.

At some point all of us full time artists had to say "fuck the world" and do things our way. We eventually overcame our fear of failure that this society is so good at instilling in every blooming artist. This is how we make things happen. It requires a high level of testicular fortitude. Now it's time to see if I have enough to pull this off . . .

UPDATE: Sunday, Feb. 24. The realization of mindset has already made a difference. Making progress again . . .

Last sessions with Dr Farias and returning to the roots

My Dad came out to hang with us a few days. He certainly knows how to chill. Still learning from him. Having family here during this time was great.

My first follow up visit: More help with facing the ups and downs. Asked to quit practicing the same stuff and compose. Fall in love with the music again, with simple chords and the way your fingers feel on the guitar. I never thought I stopped, but obviously my hands are getting in the way, or really, my head. 

Then another horrible day. No luck with any of it. 

I had only seen my friend and mentor Martin Chico once as I felt uncomfortable with my condition not being able to play more. So a week went by and after this shitty day, he shows up at our hang "Chiringuito" with his infectious smile he always has. We drink, immediately start up with palmas, baile, more gitano friends show up and he plays a literally destroyed guitar with a picture of Camaron glued on it with a broken stick and electrical tape for a capo. Juerga time. 

He offered to take us to Tres Mil again(Poligono Sur, the barrio the Gypsies were moved to from Triana) He said "you need to come hang with me and feel the joy again. You need to feel the spirit of Sevilla". Encarna and I are always up for a trip to the hood! So off we go to flamenco land to have an amazing evening "sin reglas". From my experience the relaxed vibe and warmth from the Gitanos there can really only be compared with Mexicanos. The art of being happy with less.

We got to hang with Bobote and his brother again and hear amazing stories, and of course talk flamenco. First about the times with Camaron, then how Raimundo Amador's Dad made a guitar out of boxes for carrying fish and put strings on it for him when he was a kid and how amazing he played it. They would even make them out of cardboard so the kids could start on the right hand even though the left didn't work well. Bobote went on to give an example on an empty water bottle. The aire he transmitted was ridiculous. That magical game of luring you into the compas and surprising you with the remate. Arte puro. 

You have to understand that if you are not from this barrio, you don't really go there. It always feels like an honor for us. It is not the place for photos. Wish we could share, but cameras take you out of the moment and you become a simple tourist. Best I can do is give you my view when I used nature's restroom behind the bar, haha: 

This along with a productive last session with Dr Farias was a perfect closing for my initial treatment. What he is doing for musicians and others is really the cutting edge of Dystonia treatment. He is simply a brilliant,  amazing person. He left me with all the tools I need to rehabilitate myself and to continue to teach myself how to reprogram by brain. It is now up to me to put the hard work in for the next 6 months. 

Our time with friends like Juan and Chico, also helped remind me what is important about flamenco and life in general. The experience of Andalucia is about the people, the food, wine, cruz campo, the spontaneity and sense of freedom; the ability to slow down and take the time to take it all in, and the pure love for an art form with ancient roots.

 I came here worried that I could not be who I was without playing with everyone. Most our friends had a surprising awareness of Focal Dystonia and I heard of many other cases here. It seems to be a burden many long term flamenco guitarists end up carrying. They could not have been more supportive. We will certainly be back to play and live the life for many more years to come. Viva Sevilla!

Days 2, 3 and 4 with Dr Farias

Day 2: A major breakthrough. Learning the difference between the logical left hemisphere and right side-creative/flowing-fast-electrical charge type movement or global movement as he calls it. For example tremolo should focus on on thumbs and rhythm while ignoring fingers. They should simply flow in bursts. Yes, I already new this, but understanding it in a new way helped my process. 

At a certain point I was able to play nearly a full falseta of tremolo for the first time in over a year. This feeling was later able to transfer to fast buleria arpeggio movement as well as Granaina at the softest volumes. Hallelujah. 

Day 3 was difficult. The breakthrough of day 2 did not carry over much. Depressing. It is important to understand that this is part of the process just as much as the breakthroughs. 

We addressed issues with various techniques today, and the tension both in the active muscles/joints as well as the tension created in the body/breathing. 

Day 4 -  Today seemed to be somewhere between day 2 and 4 as far as my ability to play. That this is not the point is part of what I am learning.

Dr. Farias identified the last of the physical issues with my arpeggio movement. 

More important, I've learned to identify the various aspects of my FD and feel them as they happen. I've been shown a systematic approach to reprogramming my brain to do correct movement and have already seen it work.

I've already learned how to continue to teach myself to reprogram and eventually do away with all dystonic movement and tension/anxiety. It is now clear what I have to do, I just have to accept that it will be up and down for the long haul. 

The prognosis: Dr. Farias believes I can make a full recovery in 6 months if I do this the right way. No pressure to speed the process, just doing what I have to do 7 days a week. 

As great as all this sounds, none of it is a given, and there is plenty of hard work ahead as well as the emotional challenge. I have to stay 100% focused on my recovery and my health and it will work out. Depression is guaranteed death for any rehabilitation so I will have to fight off the bad for sure. So far the excitement of being able to play well at all is overpowering any negatives. 

I will have 2 more follow up visits next week then work on my own for a few months. 

More to come, will keep you all posted. Feelin' all the love you are sending. Abrazos-  E

Day 1 - Focal Dystonia Treatment with Dr. Joaquin Farias, Sevilla, Spain

DISCLAIMER: Though I will be describing my treatment this week, I would like to emphasize that reading this and trying to treat yourself(or self diagnosing for that matter) is not a wise path to recovery. You could end up making things worse for yourself. You need to have a proper guide to get your through this labyrinth we know as the brain. And heads up, this is gonna be a long journal entry. 

Today was interesting to say the least. The point of todays session seemed to be two part, the first dominating, time wise. Joaquin tried to give me a better understanding of how the brain, body and mind work together, including the hormones and chemicals the brain/body produces such as melatonin, serotonin, dopamine etc. Sleep, stress and all sorts of factors come into play with how the brain produces these. 

The brain can really be programed in any way you wish, if you understand how to do so with the proper guidance. In the case of Focal Dystonia, it has done the opposite, programming a dysfunctional movement into your hard drive essentially. This takes a long time to develop which is why we don't really realize something is wrong till things get really bad and we can no longer ignore it. This eventually creates a chain reaction of more layers of "noise" as he calls it. The first dysfunctional movement is imperceivable, but your body still compensates creating another layer of noise. As these layers of dysfunctional movement build, layers of behavioral and emotional distress build and become intertwined. There are some layers of anxiety that are subconscious and some that are perceivable. These trigger more layers of noise. The longer this goes on, the more layers are created.

Every person and every case is different as the brain and each person's life experience is unique. Though there are common problems on the surface, the way to peel away the layers of noise has to be "customized" for each person. 

I told him how fortunate I felt to have found him, and that I might have lost hope otherwise. He brought up a couple things. First, was what I had suspected. That a combination of the Botox lobby and insurance profit issues have and will continue to not only deny those of us who need this treatment in the US, but from even hearing of the extensive studies done here in Europe unless you do your own research as I did. There is simply not enough profit to go around with this type of treatment. It takes hours of one on one therapy with a doctor not just vetted in neuroscience, but in biomechanics and psychology. 

He also brought up some very famous flamenco guitarists whom I have admired throughout my career(I will not name out of respect for privacy) who have FD.  Some of these are people he has not had the opportunity to treat, but has treated friends or students and has watched enough video of their playing to see the FD. Some simply go undiagnosed and it is career ending. One in particular that is simply heartbreaking to think about after listening to his CD today. 

Others continue to power through, re-fingering as I was doing but much more successfully at the moment. The problem is that every year you go without treating the problem and compensating with something else you create more layers of noise that are harder and harder to peel away. Eventually, you will run out of options. In my case, he feels we caught it in time, though there are no guarantees of course. 

So onto the second part, playing and addressing the dysfunctional movement. In my case, the biggest issue is my ring finger continuously repeating arpeggios ami, ami, ami etc like you would do in a fast paced bluería, or other palos including libre repetoire. 

EDIT: 1/30/2013 I've decided to take out details from my treatment as the treatment for another could be quite the opposite. In short, I am not qualified enough to give out all this info that is so particular to my case.

He guided me through the first exercise for quite some time until he saw me do the movement perfect. At this point he smiled very genuinely and said "see, there is absolutely nothing wrong with your hand, if there was, you would not be able to do this already". He repeated often through the rest of the session and it is already having a profound effect. Sure, you can say having a problem with my brain is much worse than a hand problem, yet for a lifetime guitarist it seems like a better scenario which he obviously understands. Focal Dystonia has nothing to do with your hands or your muscles. 

A second exercise was able to display the way my brain was falsely commanding my hand using a dysfunctional memory of the movement. 

I left the session with my brain overloaded with info, slowly trying to assimilate it all, and I'm still doing so as I write this. Tonight I will do my exercises he gave me before sleeping and return at 8:30AM for more.

This first day confirmed a couple things for me and took some real weight off my shoulders. First, that I was right to come here and do this, and that there might not have been another path for me aside from trying to figure it out on my own, which obviously was not working.

There is nothing wrong with my hand, and likely when the arpeggio issue is dealt with, other things will fall in place and the tendonitis type symptoms with subside. I'm not crazy, I've just got some bad neural programming that has to be redone. He said nearly all his patients have a significant recovery of at least 60% within a period of weeks to 3 months. Some make a full recovery and some faster than others. I will be able to continue teaching until my skills and repertoire are sufficient to return to the stage. I WILL be able to return to the stage, and likely will not have to wait for a year. I will start composing around my issues, slowly adding in my newly developed technique(or really old skills that used to work) as they become proficient. This is an approach that Joaquin approves and gives me significant hope and motivation. All the rest, worrying, waiting, and contemplating can now be replaced by tangible action. 

My friend Chip who suffers from spasmodic dystonia(vocal chords) was with me the horrible day I was diagnosed and said:  "This could be the best thing that ever happened to you. It could be the opportunity of a lifetime". In the moment, I wanted to punch him in the face, honestly. Now I am understanding how wise those words were. I'm starting to embrace this whole situation. I can see that my life is going to change for the better and I am excited. I listened to flamenco today with a joy I have not felt since before this all started. Life is what we make it. You can let it destroy you, or you can rise above the horrors it throws at you. There really is no grey area when it comes to facing a big challenge like this.

I'd like to thanks Eric Branner, Chip Hanuer, Susan Silver, Robin Cohen and Bryan Douglas for organizing the means for me to be here now, and to all you who have supported us. Your generosity has made my journey more bearable and the love you have sent is empowering. 

I'll close my journal entry today with an epilogue from one of Dr. Farias' books for any guitarists who might be reading this blog in search of help with their own Focal Dystonia issues: 

To all those who have read this book looking for help for their own rehabilitation, Have courage! Much patience is required to reach the end of the road.

An appropriate guide is of vital importance to help us maintain a firm focus on our final objective and to make progress when we are disoriented or have lost hope. During this process it is fundamental to maintain good spirits and keep perspective.

One patient asked me once if dystonia was a spiritual disorder. I don’t know how to answer this question, but what is certain is that in order to recover it is necessary to cultivate virtues such as patience, self-understanding, self-control, hope, resiliency, and happiness.

Make your recuperation process a route to personal transformation and an opportunity to learn.

Step 5: Rest, Healing, Learning and Introspection

Being obsessed with music my whole life made the thought of not practicing or performing for 3 months sound eternal. I now understand that is exactly what I needed.

The extra time off which the Botox has forced me into has given me the proper time to work on healing all the other physical damage my body taken from 29 years on the guitar. I may not have rested proper if not forced to. The tendonitis symptoms are slowly going away and the timing should be perfect to start my treatment the end of January in Sevilla. Acupuncture and deep tissue massage are helping.

Overall I'm still feeling hopeful, though I have to fight the negativity every day when confronting my condition and new reality. I avoid playing long periods and only play to teach, or in very fun, short spurts or easy rehab type movements. Speaking of, I must give a shout out to my students, who have always been an important part of my life, but are now an indispensable positive force in my recovery. 

I feel that I can beat this because of how comprehensive my approach will be facing the physical, behavioral and emotional aspects of FD. This time off has given me time to learn more about and understand FD. I believe one of the reasons it is considered "incurable" by many is simply the amount of time, care and study it takes for one to understand such a complex neurological condition and all that is attached to it. 

I have finally resolved to not push my recovery in any way, or try to control the timeline for it. I now understand this would be an opposing force to the principles of the treatment. Once I have my game plan with Dr. Farias, the amount of time it will take will not dissuade me as I only need to know that I can get better and that it will come if I do it right. I cannot think of a more relaxing environment for recovery than Sevilla. The love I have for this city and what it has given to my life and career is hard to describe in words.

Thanks again to our family, friends and fans for your kind, supportive words and help through this difficult time. I cannot tell you when we will be performing next as of this date, but promise that we will be back and better than ever. 

#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.