CullmanTimes.com - Cullman, Alabama

October 23, 2013

Mysterious movement disorder Dystonia leaves Cullman woman’s doctors baffled

By Tiffeny Owens
The Cullman Times

— Melissa Kirkpatrick wanted to speak but couldn’t.

She wanted to explain to her classmates, to her coworkers that she wasn’t crazy, that she wasn’t joking.

But her face wouldn’t let her. She lost control and the muscles in her jaw twitched and contorted painfully.

For nearly seven years, Kirkpatrick visited doctor after doctor, specialist after specialist, to try to find out what was wrong with her. She was kicked out of the doctor’s office, told mental and emotional problems were causing her to have such fits.

Then finally an answer came when she had all but given up hope: Dystonia, a  neurological movement disorder where sustained muscle contractions cause twisting and repetitive movements or abnormal postures. In most cases, Dystonia tends to lead to abnormal posturing. Many sufferers have continuous pain, cramping, and relentless muscle spasms due to involuntary muscle movements. The disorder may be  inherited or caused by trauma.

In Kirkpatrick’s case, the painful muscle contractions in her jaw began immediately after a man she was in a relationship with assaulted her, knocking her unconscious and twisting her head. The incident occurred in 2000, and she suffered with the mysterious muscle spasms without any clue as to what was causing them into late 2006.

The contractions in her jaw could be so powerful and uncontrollable, the Hanceville resident would chip teeth and bit her lips, tongue and inside of her cheeks. One particularly traumatic episode caused the left side of her jaw to completely dislocate and twist out awkwardly to the side where it stayed for a few hours in excruciating pain.

“That particular incident was my nightmare because I went to the emergency room, and the doctors told me there was nothing they could do for me. That I was causing it. It was sheer terror because I felt like my body was out of control.” Kirkpatrick said.

Besides the physical pain, the humiliation of the episodes made life harder. When her face contorted, people would often laugh at her, thinking it was a joke.

She couldn’t drive a car for fear of being overtaken by the spasms and couldn’t eat or speak when they occurred.

In late 2006, she learned about a movement disorder clinic in Charleston, S.C. and made an appointment.

“They did one test, and then the doctor came and in and told me, this is what you have, Dystonia,” Kirkpatrick said. “I about died. I was bowled over. I cried because I was so happy I finally had an explanation. I wasn’t crazy. Then he told me there was no cure.”

Kirkpatrick now receives high-dose botox injections —10 to 30 in each sitting — every two to three months. The injections are made along her scalp and chin line.

“Everyone says, ‘You’re never going to get wrinkles,’ but where I get the shots, it doesn’t wrinkle. The injections are very painful, and there’s always that chance I could die from them,” Kirkpatrick said.

The other two treatment options were too invasive for Kirkpatrick: deep brain simulation where a device that sends periodic electrical impulses to specific regions in the brain is implanted into a patient’s brain or denervation where the nerve that spasms uncontrollably is surgically removed, leaving the patient unable to move that area of their body where the nerve had been.

Kirkpatrick said prayer and persistence is what kept her going. Her ultimate goal is to find a cure, for not only herself, but for the countless others who are afflicted with Dystonia which is often misdiagnosed. She hopes to start a Dystonia support group and connect with sufferers across the country by reestablishing an online chat room.

On Saturday, Oct. 26, Kirkpatrick, an occupational therapist assistant, will host an educational seminar on Dystonia at the Cullman Civic Center through her startup company Medical Journeys Continuing Education. The seminar will not only be an opportunity for occupational therapists (OTs) assistants, physical therapist (PTs) assistants and medical assistants (MAs) to earn required continued education units, or CEUs, but also for Kirkpatrick to share her story.

“I want dispel the myths and get past the social stigma, and take the scientific research we have on Dystonia and combine that with the stories of real people who are living with this so we in the medical profession can have a better understanding of this disorder,” Kirkpatrick said. “We need to have compassion with our patients and understand what they’re going through so we can help them.”

Others who have been diagnosed with Dystonia will share their stories, and proceeds from the seminar will go toward raising awareness and finding a cure for Dystonia. Former Miss University of North Alabama and Vinemont native Jackie Rainwater Fox, who survived a huge tree limb falling on her during an ice storm in 1994, will also share her inspirational story of recovery.

For members of the public who want to learn more about Dystonia, a free screening of the PBS Independent Lens’ documentary film “Twisted” will be 6:30 p.m. Oct. 26.

On Sunday, Oct. 27, Medical Journeys will host an obesity seminar which will feature Cullman chiropractor Jeffrey L. Cole and his “8 Weeks to Wellness” plan. Kirkpatrick, who recently underwent gastric sleeve surgery, said the seminar will cover ways to prevent obesity, how it’s affecting the nation’s health care system and how food has changed over the years.

The seminars will qualify as continuing education units (CEUs) for the following assistants: OT, 9.6 hours; PT, 8 hours; MA, 9.6 hours and speech, 5 hours for Oct. 26 only.



Educational Health Care Seminar

When: 9 a.m.-5 p.m., Saturday, Oct. 26 and Sunday, Oct. 27

Where: Cullman Civic Center

What: Learn about rarely diagnosed Dystonia movement disorder Saturday and problems and possible solutions to the obesity epidemic.

Cost: $55 for those seeking continuing education units (CEUs), $10 for the general public.  

Registration: 8 a.m. Oct. 26.

More information: Go online to www.medicaljourneys.webs.com or call 256-887-8118 or 256-339-5631.



Tiffeny Owens can be reached by email at towens@cullmantimes.com or phone at 256-734-2131, ext. 135.