Catie's Story: The Beginning, Not the End

The following dialogue is from an interview with Catie McKee from Texas. Zach, our publicist, is using this interview to write a story about Catie and her struggles with dystonia. Once completed, we will submit Catie's story to national newspapers and magazines in an effort to raise awareness for those who suffer from dystonia.

   

Catie McKee

Age: 20

Location: Plano, Texas

Occupation: College Student

Diagnosis - Date: Dystonia – December, 2010

“I feel like it’s extra baggage that comes with me. People have their relationship problems, but I have a whole disease that comes with me.”

Q: When did Dystonia start affecting you?

A: Through high school I had the constant tremor in my hands and I just contributed it to being nervous or anxiety or being cold. Holding things was sometimes difficult, but it wasn’t affecting my walking or everyday physical activities. But my senior year in 2009, it got to where it was in my arms as well and my torso would tremor and shake, But I still tried to ignore it. Then, in March of 2010 (9 months after HS graduation, 19 years old), my Dad was down here in Texas visiting, and he noticed that it was getting worse. So he made me go to a neurologist and everything started from there.

Q: Do you remember the first time you started noticing the tremors?

A: The first time, no. The first times it was just an annoyance because it wasn’t painful. There wasn’t really any effect.

Q: What were the beginning stages of your Dystonic symptoms like?

A: It was embarrassing because even though it was just in my hands, whenever I’d carry something or reach for a glass, you could see it. It was always an issue for everyone around me. It really wasn’t an issue for me because I was kind of used to it because it had been happening for my whole life. I didn’t really notice it until people started pointing it out. So I tried to keep my hands not visible or I’d cross my hands. I didn’t want to bring attention to the issue.

Q: Did you ever have a boyrfriend and hold a guy’s hands with these tremors?

A: No, thank goodness! I would’ve had to avoid that, I didn’t wanna deal with that! They wouldn’t understand, so no.

Q: Did your parents know, during high school, that you were having these tremors?

A:  No, because they were in Indiana and I was in Texas, I didn’t really say anything about it.

Q: Your dad noticed a significant difference in your tremors when he visited in March of 2010. What do you think got worse between June of 2009 and March of 2010 that made him notice?

A: I think the fact that it was not just my hands, but in my arms and torso. If you were watching me, you could see it. (There was) twisting and jerking. I was doing all of it.

Q: What was it like walking around a college campus with this awkward jerking and twisting motion?

A: Embarrassing. The whole public speaking thing or being the center of attention or whatever, I’m not a fan of that. It makes me anxious, and that makes my tremors worse! It was just an uncomfortable feeling. Even if everyone wasn’t looking, I still felt like they were.

Q: Walking around campus as a freshman is usually an opportunity for young guys and girls to check each other out. Everyone is looking at everyone else. But for you, something made your body twist and jerk as you walked around campus. How did that affect your dating life?

A: I feel like having my Dystonia is kind of blocking that whole dating life. I’m not even focusing on that right now because it’s so hard to explain to someone what it is. And then I feel like it’s extra baggage that comes with me. People have their relationship problems, but I have a whole disease that comes with me. So I’ve gotta take that slowly.

Q: So it’s kind of like a teenage pregnancy with Dystonia?

A: Exactly, it’s never going away.

Q: When did you first hear of Dystonia?

A: December of 2010.

Q: So it took about 9 months to figure out exactly what it was?

A: Yeah, because I was going to different doctors and stuff.

Q: What was it like to go from doctor to doctor not knowing what you had?

Well, in March (2010) I saw one neurologist and she started off with the routine blood work and all these tests and the physical exams. My blood work came back normal except that I had an abnormal copper level. So she automatically assumed that I had Wilson’s Disease. So when she said that, I researched everything and prepared for that. But when she reran the test, it proved that I didn’t have Wilson’s. She couldn’t think of anything else it could be.

So she sent me to the specialist that I’ve got now in Dallas, and she specializes in Parkinson’s. When I first saw her, she started running me through the CTs and the MRIs and X-rays. I had to get a spinal tap, but that went badly because when you get a spinal tap, you’re supposed to lay still, and I can’t do that because I shake. So I had to get a blood patch for that.

Over Christmas of 2010, I was in Florida visiting my parents and I went to the Mayo Clinic. So I saw another neurologist there and he was the first one who thought I might have Dystonia.

Q: By that point, had it spread further than your torso and your arms?

A: Yeah. In November 2010, I was in Florida (with my family) for Thanksgiving and we went to Universal Studios (theme park). For the most part it was just in my hands and my torso with tremors and a little bit of twisting.

I don’t know if it was a combination of walking and the rides, but I kind of had a mini-seizure at the park. Everything started shaking in me. It was in my legs, I couldn’t walk. My dad had to carry me and take me somewhere to sit down. It was an awful feeling, it was really terrifying.

I literally took two steps and he was there. So he carried me to where we could sit down outside of where the ride was and people were walking by. We were sitting there and I was literally convulsing in his arms and people would walk by and stare. That’s the worst part of this whole situation. Of course, it’s not always pain free, but I think the staring part is as sucky as the disease itself. That look like “What’s wrong with that girl?”

Q: What did your Dystonia immediately eliminate from your life?

A: When I was in Florida for the past 7 months, that’s when it was at its worst. I had a cane and a walker. And if I didn’t have the medication that I’m on now, I would probably be in a wheelchair because none of the meds were working. It was trial and error for a really long time.

The fact that I had to move states was a really big deal for me because I felt like I was moving backwards. Because I was 20; I was out on my own. And then suddenly I was back with my parents. I had to stop two internships because I physically couldn’t do it. I was working and I couldn’t do that anymore.

I couldn’t do a lot of the things that 20-year-olds do. I couldn’t go out and go places and do things, and I couldn’t do that anymore. I got really psyched for my best friend’s birthday and we went out to a little dance place and they had this mechanical bull. And I really wanted to ride it, but I couldn’t because my body was already convulsing and that would’ve set my body off.

Q: It’s been a year since that day at Universal Studios, what does Dystonia affect in your body now?

A: I still have the tremors in my hands and my arms. I can walk and go places, but I can’t drive very far without my legs starting to spaz up or cramp. I can’t walk too long. It kind of looks like my right knee cap is buckling. So if I do too much physically, I could be out for two days. When I first moved out, I got too extreme. I was trying to do too much unpacking and organizing everything, and I ended up on the couch for two days.

Q: You are a little religious. Have you had any faith struggles going through all this?

A: Yeah, as bad as it sounds, I have. Not to be cocky, but I like to think that I’ve generally been a good person. And for a while, I just kept thinking ‘of all the people in the world that do terrible things, right when I’m starting to get my life on track with deciding what I wanted to do with the internships, and I wanted to do social work and counseling. And I had a good routine, and then this all had to start. I don’t want to say that I blamed God, but at the same time, I was not the biggest fan.

Q: How have you overcome that?

A: I’ve just had to change my perspective. Instead of looking at it negatively and blaming someone else, I just have to say ‘Look, it happened to me for a reason. It happened to me because I can deal with it. Because I want to make something of this. I want to be an advocate of this.