Dystonia is currently the third most common neurological movement disorder syndrome. However, most are not aware of its existence. Dystonia affects an estimated 500,000 people in North America. It causes the brain to send improper signals to muscles, resulting in awkward, often painful, movements and postures. It can progress slowly overtime. Dystonia affects people of all ages and can make it difficult to perform even simple tasks like walking, talking, eating, drinking, and even breathing. There is currently no cure for Dystonia and it is not unusual for people to wait years or decades for a diagnosis. Having an officially recognized awareness month will bring much-needed attention to this disorder and hopefully lead to proper diagnoses, better treatments, and someday a cure.

This is my personal story: Living With Dystonia

People with Dystonia should be aware that deep brain stimulation is not a one-size-fits-all solution. This neurological procedure will work well for some, but can be ineffective for others. Individuals that are affected by Dystonia or know someone who is should read my story for awareness of the side effects and complications. No one should have to go through what I did.

My name is Byron and I am twenty-seven years old. I recently earned my bachelor degree in Web Programing and Computer Science at California State University San Bernardino. Twenty-two years ago, I was diagnosed with a rare muscle movement disorder called Generalized Dystonia, which took everything away from me including happiness and the ability to enjoy my life. It slowly caused speaking disabilities, poor motor skills and difficulty walking. Later in life, it led to stiff muscles, painful twisting and turning of my neck, arms, legs, and overall body. I was not in much pain, but I was still in bad shape.

In 2008, my doctors told me about a surgery called Deep Brain Stimulation that would help me get better and regain most of my normal life. I was compelled! Therefore, I decided to research it before coming to a decision. After informing myself about the procedure I decided to have the surgery. The results were amazing! I felt reborn!

It was a two-part surgery. First, they give you numbing shots. Then, to keep your head stable, they put a huge metal frame over your head. It is held in place with five screws (despite the anesthetics, it is painful). An MRI is used to target an area of your brain and two probes are put in place. It is necessary for you to stay awake during the procedure to communicate with the surgeons. In the second part of the procedure they place a battery in your chest muscle that connects to a wire leading to the probes in your brain.

As the surgeons began the procedure I vividly, recall hearing and feeling the vibration from the drill and the screws entering my skull. Soon after this, I blacked out. Once I was asleep, they inserted two probes in my brain. In order to give me time to recover the second part of the surgery was performed three days later. When the surgery was finally over, I woke up with some complications. I lost control of body movements and could not do anything on my own.

During the recovery process, I was not making much progress. This lead to depression and I began to have suicidal thoughts. I remember telling my mom, “Mom, I feel depressed and I can't do anything.” It broke her heart. She told me, “You will. Don’t worry. It takes time.” My symptoms did not subside instantly. It took a lot of time to make progress. Three weeks later adjustments were made to the battery that, in theory, would allow me to control my whole body. Since I lost consciousness, the adjustments did not give me the fully desired outcome.

A week went by and I was strong enough to start doing some exercise. I worked my butt off, one hour a day of strength training, weightlifting, push-ups and sit-ups to work out all the muscle groups in my body allowing me to control them. I started doing some basic yoga poses to correct the abnormalities in my posture and walked thirty minutes a day. When I would fall, I would get right back on my feet and try again. I even began training after getting home from school. This was not the best thing to do since I recently had the surgery, but I was up for the challenge. I was a fighter after all.

In December of 2014, my battery died. Luckily, some of my symptoms did not return since I managed them by working out, eating healthy and taking medications. Today, I am still having some problems, but I am up for the challenge and face them head on.

My DBS procedure resulted in blacking out and waking up with complications. For this, some may ask if I regret going through this procedure. The answer is no I do not. I have friends and family who motivate me. Overcoming the complications of the surgery made me realize that I am a lot stronger than I thought I was and that I will never give up until there is a cure one day.