Tuesday, January 29, 2013

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.

Saturday, January 5, 2013

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.