What is dystonia?

Whatever comes, let it come

 

Dystonia is characterized by involuntary contractions of specific muscles or muscle groups, usually resulting in abnormal postures and dysfunctional patterns of movement. Often the contractions are repetitive, like a tremor, and can sometimes be forceful and even painful. It is often accompanied by anxiety, depression and other mental disturbances.

This essentially means that when trying to move a limb, something else moves. It’s like the brain confuses muscle groups. Sometimes the body tries to stretch and flex the same joint simultaneously. Sometimes the nerve signals are simply chaotic, and muscles would turn on and off rapidly producing a tremor. When moving your neck to the left it might force itself to the right or up and down. When moving a finger another finger may curl. When trying to play the horn your lips may start to tremble.

There are many categories of dystonia and one of the least inconvenient seems to be the task-specific focal dystonia which is prevalent amongst musicians. In perspective, loosing control of your cervical spine is more dramatic than loosing control over your index finger. Yet, to a career musician a simple dystonia can easily destroy the entire life path and the identity of a person. Which is not a small thing.

What is dystonia?

It is one of those things which is hard to describe - at least without sounding bitter or depressed. Dystonia was for me something that snuck into my life unseen and unheard. Slowly it would eat at the control of my hand without me realizing. Like musicians often do I would blame myself and my technique for the flaws I had, thinking I had to work harder, practice more hours. Little did I know this would only fuel the fire.

Even after the onset was pretty severe I couldn’t stop trying to overcome it by pushing harder. Somehow this world taught me to do just that, just try harder. The obvious answer would be to stop and think. Instead I learnt bigger pieces and played more concerts. Setting myself up for disaster.

As disasters go, it is not very large in scale. Nobody died from this incident. It’s not cancer. I still have my limbs intact. My sensory systems all work. I excrete normally. Somehow it is humiliating to talk of this condition and pretending that it has ended the universe. I can still talk. And write. I can teach. I love teaching. Yet, this incident signals an inevitable shift in a life which stubbornly insisted on a solitary path. It forces me to choose differently and to transform.

And transformation is, as we know, hard. It is not painless. It is discipline. It is exhausting. It is an incredible amount of failing. And trying. It is patience. But if done right, it can lead to blossom.

 

“It is not possible to overcome focal dystonia without experiencing a profound change in the way we act and in the image we have of ourselves. Recovery is dependent on a maturing process; It is necessary to understand change as an opportunity for improvement.”

-Dr. Joaquin Farías

Who gets Dystonia?

Whatever stays, let it stay

 

The riddles of dystonia are yet to be solved. The meaning of this is that a common denominator for dystonic patients has not yet been identified and as such it is impossible to determine who will have dystonia or not. There is also no specific test to be carried out for a diagnosis. Dystonia is still an enigma.

What seems to be certain is that the development of a dystonia is a very complex matter and cannot be attributed to a single medical field. Genetics seem to play a part, but it cannot explain the issue alone. There is evidence that there is a problem with the neurotransmitters, and thus the general communication between synapses, which is causing chaos to how the brain chooses to regulate movement patterns. There seem to be evidence that stress and anxiety play a role, but it is difficult to determine whether the anxiety is a part of dystonia or dystonia is part of anxiety.

Dystonia is not even a thing in it self. It is an umbrella that denominates many different conditions and often just plays a role in a more complex diagnosis such as Parkinson’s or Multiple Sclerosis.

To the patient of course none of this really matters. Dystonia inexplicably and suddenly occupies control, and nobody holds a definite method to relieve the onset. The patient’s loss of bodily control and uncertain prognosis gives a good reason to panic, fall into depression and otherwise loose faith in life. It’s a personal tragedy.

Who gets Dystonia? Nobody knows.

Who gets Dystonia?

That is like asking “who am I”? “Why did I get dystonia”? No one seems to know. I certainly don’t.  An attempt to answer this can only be the story of myself, as much as I have the gut to disclose to the public. And to myself.

It seems to me likely that the onset of dystonia is somehow connected to obsessiveness, to stress, and to very sensitive souls but of course this is just a generalized point of view. Or simply a projection. I would be worried about people who practice not out of joy but out of stress. I would be worried about people who radically change their playing technique several times over, obsessively trying to improve themselves, especially if they don’t know very well what they are doing physically. If somebody practices for eight hours and then feels it is required of him to keep on practicing, then I would be worried. But I would worry about these people for much more than dystonia.

However, all the symptoms of a problematic mental health would likely be ignored in this field. Because we’re all trying to be strong. Survivors. Pushing through the pain. Unwittingly missing the fact that those who are actually strong take really good care of themselves. Yes, their emotions too.

I tried to be strong for a while. It crushed me.

 

I do not love you,

He explained,

And I do not need you,

He warned,

I want to leave you,

He said,

To the mirror

What’s the treatment?

Whatever goes, let it go

Focal Dystonia is being categorized as a movement disorder in the field of neurology. There is no cure but there are treatment options, most of which are simply meant to relieve the symptoms.

Botulinum toxin is a terrible poison that paralyses the nerve endings in neuromuscular junctions. It is often used to treat movement disorders such as dystonia by limiting the actions of a specific muscle to relieve the patient of symptoms. This is the most common and the prevalent treatment of dystonias.

Research is being done in multiple fields to find answers. One field believes that genetic modification treatment holds the secrets to a future cure for dystonia. Another approach is to alter the neurochemical balance through supplementation. There have been successful treatments of specific dystonias with dopamine supplements. Some think that with more knowledge this too can lead to a cure.

And then there are those who focus on retraining. This springs out of neuroplasticity which revolutionised the fields of neurology and psychology some decades ago. They suggest that proprioceptive and sensory stimulation may induce neuroplasticity. Meaning that our movements themselves can inspire the brain to reconnect with original movement patterns. It is not easy and very lengthy but certain methods have shown significant positive effect and have even lead to full recovery.

What’s the treatment?

There is none. At least that is the first reaction of someone with an onset of dystonia. It says everywhere that dystonia has no verified treatment. It is an incurable brain condition that nobody understands. It’s doom.

Not really. Not anymore.

I don’t very much trust the doctors who wants to treat me with poison. Of course, I am not in any position to make such judgements. There are many stories about dystonic patients who was able to function well with the treatment of botulinum toxin. But when I heard about treatment options without the use of medicine, it seemed obvious to try that first.

This condition has set me on a long journey of discoveries. I’ve acquired some astonishing knowledge about the body and the brain along the way. Even though I still only understand a sniff about how movement is generated I am still incredibly much more informed than I used to be and fascinated about the subject. And I’ve come to understand that this is key to overcoming the issue. Because through understanding I can accept. And with acceptance I can let go. And when I let go I can change.

That is my treatment.

 

The battle against oneself can only be won when the weapons are laid down. 

-Dr. Joaquin Farìas