27 Years for a Diagnosis

When Joey Tehle was 10 years old, she and her parents noticed something was wrong.

“My gait became slow and unbalanced. I could no longer ride a bike,” she said. “My speech was slurred, I had difficulty eating. My parents described me as being very lethargic.”

Before that, she was an active child — running track, playing basketball and singing in choir. But her symptoms slowly worsened. Tehle was in and out of hospitals. Doctors thought she’d had a stroke or some other brain injury.

“I had every test known and they all showed nothing was wrong,” she said. “Yet something obviously was.”

She spent years going through speech, physical and occupational therapies.

It wasn’t until Tehle was 27 years old that a doctor finally figured out what was wrong. She was diagnosed with dystonia, a disorder that affects every part of her body and for which there is no cure.

Joey Tehle, who has dystonia, uses this typing tool to communicate directly with others. Michael Vosburg / Forum Photo Editor

Dystonia causes involuntary muscle spasms and contractions resulting in painful and abnormal postures, according to the Michael J. Fox Foundation for Parkinson’s Research.It affects more than 500,000 people in North America, is the third most common movement disorder and is a symptom of Parkinson’s disease, the foundation states. But many people haven’t heard of it.

Tehle said she was relieved to receive her diagnosis because she knew what was happening, but she also worried because she had never heard of the disorder.

Now 47 years old, Tehle is now working to raise awareness about dystonia, partly so others don’t have to wait as long for a proper diagnosis as she did. She participated in a Jump for Dystonia social media campaign that involved posting photos of people mid-jump as a way to raise awareness.

She is also working with the organization DystoniaAware to collect 100,000 signatures to petition the White House to officially recognize September as Dystonia Awareness Month.

But it hasn’t been easy. Tehle recently biked to North Dakota State University from her south Fargo apartment and was able to get only one signature — mostly because people wouldn’t stop to listen to her.

She can talk, but it’s hard work and said it can be difficult for others to understand her. So she communicates with a Light Writer Connect machine that allows her to type what she wants to say and it reads back what she’s written.

Tehle said she’s grateful she does not live in constant pain, as do some with dystonia. Some days are harder than others, but overall she said she is fairly independent.

“I do have bad days or bad moments where my legs don’t want to move so then my whole body freezes up and I’m stuck, but with medicine I seem to be doing OK,” she said. “I don’t let things stop me.”

Tehle is able to live on her own and take care of her basic needs. Community Living Services helps her with more-difficult tasks, like putting her sheets back on her bed and cleaning her bathroom.

She exercises often to maintain her strength and whenever the weather allows it, she rides her adult tricycle, equipped with an electric assist to help her go farther, faster. And she maintains a positive attitude.

“I have to be positive,” she said. “There is no room or time for self-pity.”

How to help

A Dystonia Awareness petition, asking the White House to make September Dystonia Awareness Month, can be signed at petition.dystoniaaware.org.