HEALTHY LIVING: Dystonia, smiling through the pain

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EVERETT, Wash.-- Everything at Costco is supersized, but the biggest thing in the store isn't for sale. Patti Pater's smile is tough to miss, and even tougher not to reciprocate. She has spent years working in customer service,  "I just got promoted a couple months ago..."

Now she is a cashier at the South Everett Costco.

Despite her kind demeanor, she says at least one person a day makes an insensitive comment to her about her looks,  "Well one time I had this lady, my line was really long and it was a really busy weekend. She told me that she has been looking at me for the last 10 minutes, and I've been making faces the whole time so she was laughing at me. So I just told her I have Dystonia and I can`t help it."

Dystonia is a rare neurological condition where muscles involuntarily contract. Which comes with physical and mental pain,  "Makes me feel like crying most of the time, but I kinda just gotta get over that and know that there`s so many people in my life cheering me on, loving me for who I am and not the faces that I make."


Patti's complications started early. As her sister, I had a front row seat, "No one knew what was wrong with me for the longest time."

When she was born, Patti had seizures and was on medication that impacted her mental and physical development.

It wasn't until she was 16 years old, "When I first got into high school, I couldn't stop twitching and just all of a sudden this pain happened..." that she found a source for her spasms, Dystonia, "I felt like an outcast. Like I wasn't like everyone else anymore."

But with time, Patti figured out how to navigate the incurable disease, by positioning her hand a certain way, she says she can focus on her words, not her muscles, "A lot of times when I'm talking, I feel like I can't say what's on my mind and you'll see me like this a lot of the time, or like this... so I can actually talk what`s on my mind."

Now at 31 years old, Patti is more confident in her abilities than ever, "I feel good about supporting and providing for my family. It makes me feel really good about myself."

As she is also legally the caregiver to her boyfriend Nick, "I have to tell him in the morning after he eats, Nick take your medicine."

Nick lives with Asperger's, Cerebral Palsy and is legally blind.

"I know he feels safe with me. It`s nice to give him a chance in life, too."

While he MAY not be reminding Patti when to take her vitamins, Nick is caring for Patti in a different way, "I just feel like I can be myself to Nick. I don't have to hide anything."

Nick's love, unconditional, "She is perfect, to me, she is perfect in every way."

Now if we could all just navigate what's unfamiliar with a little more tolerance, "Even if you're saying are you okay? You know I can be like, 'Oh I have Dystonia' and that brings up the topic of what's going on, instead of saying what the heck is wrong with you?...I wish they would just look beyond my disability."

There are still a lot of questions surrounding the disorder as there isn't a lot of research behind it yet. According to the Dystonia Foundation, the disorder generally develops gradually. It does not shorten life expectancy or result in death.
There are forms of dystonia that are known to be genetic and forms that may not have a genetic component, which is called Acquired Dystonia.
That can be brought on by injury to the brain which includes having a stroke, or being exposed to certain medications.

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