Living with Dystonia

Imagine being an active, 30-something woman one day. Then, just a few weeks later, you find yourself bedridden and unable to control your body.

In May 2008, Rogers Hartmann, a television and film producer, says she woke up with a stiff neck, and her head was tilting to the right. Within a week, Rogers' body was fully contorted and bent at a 90-degree angle.

After a series of misdiagnoses, Rogers was diagnosed with dystonia, a rare neurological disorder that causes her muscles to pull her body to the right. The tug-of-war going on inside her body causes excruciating pain.

"I'm a 37-year-old woman, but I feel 80 or 90," she says. "It just feels like muscle contractions you can't control, and as the day progresses and depending on how much I do that day, I'm more and more crooked to the right."

Rogers says she now sees the world like she's never seen it before—sideways. "Just the simplest things—making coffee, opening the refrigerator, feeding the dogs—it just totally drains you."

Watch as Rogers shows you the world from her perspective. 

Most days, Rogers works from her home office—the bed. On a busy day, she says she might have 15 to 20 debilitating muscle spasms, which stop her in her tracks. When this happens, Rogers says she pours herself a glass of wine and lies down until the pain becomes bearable.

"I don't have a drinking problem, but it really helps relax my body," she says. "I've decided to do whatever it takes to get through the moments like this."

Rogers also receives Botox injections every three months to alleviate some of the pain.

Dystonia is a disease that doesn't discriminate. Dr. Oz says this disorder can be caused by genetics, trauma and, in some cases, medication. "Medications that are used for Alzheimer's disease sometimes...some for nausea," he says. "It's not always that clear." Rogers says she has a family member with dystonia, which may explain her case.

When you have dystonia, which is often associated with Parkinson's, Dr. Oz says lubricating cells in the brain get knocked off track. "Once it happens, then you begin to tilt over," he says. "Then, it sort of falls upon itself because now you're a Leaning Tower of Pisa. Those muscles are overstrengthened and start to pull you down. ... It twists your body so your bones begin to change their shape. So if you're going to act on it, you have to be proactive early on."

Since being diagnosed with dystonia, Rogers has faced physical and social challenges. At times, she says strangers assume that because she's physically disabled, she must also have a low IQ.

"In the beginning, it was very difficult for me, but I got over it," she says. "It takes awhile to adjust to how people see you, because I think people consider me a bit of a spitfire, a strong person. So to suddenly have people seeing me a different way was definitely an adjustment."

Strangers aren't the only ones who've treated her differently. "With my friends, I think people think if they hug me, they're going to break me," she says. "I think they immediately associate me with pain."

Despite her positive attitude and high pain threshold, Rogers says living with dystonia is overwhelming at times. "I would say I cry probably once every six weeks about dealing with this," she says.

Think you or someone you know has dystonia? Dr. Oz says 90 percent of people with this brain disorder are misdiagnosed at first...so ask for a second opinion.

"Dystonias manifest themselves in many different ways," he says. "Now, I don't want everyone going out there thinking they have dystonia, but a lot of people who get writer's cramp, especially right after you start writing, it's not just because you're using your hand. That's actually a focal dystonia."

Rogers says there may be thousands of undiagnosed people around the world.