Austin

A Diagnosis at Age 9

Austin's journey started at the age of 9 with leg spasms. Within a week, he was unable to sit or lie down. He remembers being diagnosed with dystonia within two or three months from the onset of symptoms.

At school, Austin felt ostracized because his symptoms made it impossible to sit down at a desk in the classroom. "I stood up at a cabinet for two years of my life, because that was the only 'desk' that was tall enough for me."
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"Because I was nine years old, my parents were pushing surgery off until later, so we started [with] the medicine route. I started taking almost 18 pills a day just to survive," Austin said.
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Within a year, Austin's medication regimen was no longer as effective as it had been. That's when he and his family began exploring DBS. In 2010, DBS was still a fairly new procedure at the clinic where he sought treatment.
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"It was very scary that people were going to put wires in my head," Austin recalled. "But I was probably less scared than my parents were," he said, because of his young age and the fact that he thought having wires in his head would be "super cool." 
  
When it came to self-esteem, Austin said it helped to just embrace the fact that the procedure was happening. He decided the quicker he could adjust to it and understand it, the better it would be for him in the long term. He also said his scars made him feel like the "cool kid" in middle school, and he now sees them as a sign of his journey. "My scars are my tattoos. I don't show them off, but I'm not afraid of them, because it's [about] accepting that this is who I am."

Living with the DBS Device

Austin and his family chose a rechargeable battery for use with the DBS device, which he has to charge daily. "Every day I need to take 20 minutes to recharge my battery, otherwise I face the consequences of it randomly dying on me." And he can tell when the batteries are getting low. "I can feel my face pull a little bit, and that's not fun," so he makes sure to keep his batteries charged.
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Following DBS, Austin's biggest fear was that the system would turn off without his knowledge. It once took two months to discover his system had been disabled after passing through a heavy security system.
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After more than 12 years with the DBS device, Austin is able to have control over his system, which gives him a feeling of autonomy and independence. "Starting out, they didn't give me any control over the way that my system worked. Now, I basically have complete control over impedance, pulse width, and voltage," he said.
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After so many years of working with the device, Austin said, "I know what everything does, so when I have a symptom flare up, I'll turn my voltage up for one side just a little bit more, because I know I'm going to need that extra boost."
 
Because he's able to customize his settings for what he needs in the moment, a side benefit is that he doesn't have to see his doctor as often.

The Benefits of DBS

Austin grew up playing sports with his brothers, and sports were an important part of how he connected with his family and community. Before DBS, Austin's dystonia symptoms prevented him from playing. Within two years of DBS, he said, "I was back on the court with my brothers and back on the field. My biggest hope was answered.”
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As an adult, Austin is able to live independently, and he was able to realize his dream of going to college. He makes the nine-hour drive home from campus by himself, which he said would have been impossible without DBS. "Life is livable on my own now," he said. 
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When considering whether or not to pursue DBS, Austin said it's important to weigh all the factors and to not be afraid to ask questions. "If one person gets DBS, that doesn't mean another person should." He also says he still has some challenging moments, like with recharging his battery, but he's been very happy with his choice. "Every individual situation is different. My situation was right for DBS."