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.

Who are we?

 Who We Are:

 “Tonic for the Dystonic” is a non-profit organization for Dystonia awareness. Dystonia is a painful muscle disorder that there is currently no cure for.

What We Believe:

We believe in finding purposeful and engaging ways to raise awareness for Dystonia. We believe that everyone has a story and that those with this painful muscle disorder need to be heard.

Our Mission:

 Our mission is to spread awareness through campaigns and fundraisers. The money raised through these various events will be donated to the Dystonia Medical Research Foundation based in Chicago where research is ongoing to find a cure. Donations can be made at events or online at http://tonicforthedystonic.blogspot.com/

Our Vision:

 Our vision is to build a community of supporters who are united in our desire to aid those struggling with this debilitating disease. We hope to become a prominent example of service, compassion and leadership in our community through our efforts.

Our Commitment:

We are committed to educating others about Dystonia and gaining their support in finding a cure. There are many people affected by Dystonia and it is our commitment to help their individual stories be heard.

For questions contact:

tonicforthedystonic@gmail.com

www.facebook.com/tonicforthedystonic

Living with Truncal Dystonia

My Story with Truncal Dystonia

By: Brennyn Marie Torres Carmen

 

Middle school. As soon as you think back to those awkward two years, you cringe. But at least you could walk normal.

It’s 2003 and I’m an 8^th grader. I pride myself on being tough. I love swimming, running, karate and water polo. I challenge the boys at anything and everything, and most of the time, I won.

It was like any other day as my PE class stretched in preparation for a timed mile run. This, of course, was my forte and I could not be more excited and stoked to top my male counterparts … again. While stretching in the lunge position, a kid behind me pushed me into the splits. Fortunately for the kid’s face, I could manage the splits. But when I got up to tackle him, a severe cramp shot through my left leg, leaving me gasping for air. After my friends helped me up, I swallowed my pride and forced myself to ask the PE teacher if I could sit out the run.

I felt fine by the end of that PE period, but things were about to get much worse. Next period, when I walked up to my science teacher's desk to turn in an assignment, my left leg suddenly collapsed. Fear struck me instantly. The whole class stared as I struggled to find my balance and control my left side, but my hip wouldn’t move! My heart raced with devastating embarrassment, the worst feeling for a 8^th grade girl. I’ll never forget that walk back to my desk: the spasms and crippling cramps flowed from my hip to my lower back to just under my left rib cage. All my classmates giggled as they watched me stumble to my seat. 

Brennyn Marie Torres Carmen is too tough to whine, especially if it’s just a pulled muscle. So I didn't tell anyone what was happening. But it never, ever went away. 

After four grueling weeks, I finally gave in and told my mom. Our family doctor told me it was a pulled muscle and to simply give it time. He prescribed me some pain medication and told us to come back if the pain persisted. 

It didn’t just persist, it grew worse, even though I sat out all my sporting events and PE. Imagine the constant disabling surprises I encountered: my torso twitched, my hip jarred and would't pivot, my leg often seized from knee to hip, rendering me incapable of walking mid-stride.

We visited the doctor over and over, fearful that the disease could be linked to leg perthes, arthritis or worse. The medical tests began piling up. I even had femoral hernia surgery because the cramps in my thigh were so intense. One surgeon found several micro-tears in my leg during the surgery. So I got MRIs done – special MRIs – with dye to test my spine and my hip. 

In the mean time, my heavy pain medication made me sick and confused in school, but I was unable to walk without the pills. Friends at school named me "Gimpy" because my walking gait was so funny-looking, even when I was on medication. I basically had no control of my entire left side. Physical therapy became a daily chore, and I had to drop all sports but swimming, and the only stroke I could do was the butterfly.

After five whole years, a third of my life, with no explanations and no diagnosis, we met a spine and rehabilitation doctor who specialized in Dystonia. He performed a test that recorded the spasms and cramps and officially diagnosed me with "Truncal Dystonia". We were so relieved, even though there was no cure. I could finally get the right treatment.

I began receiving Botox shots to my hip right away, which helped immensely at first. I was able to walk around school and swim better, and study in school without the pain medications overtaking my brain. I even placed second in the butterfly in our region's championship swim meet. 

When I left for college later that year, the Botox was weakening in effect. By that time, though, it had spread to my knee and calf. I had to have disability leniency with the university, and it was a tough first two semesters. 

Then, a doctor prescribed me Neurontin. This medication was a miracle worker because the signals from my brain were slowed down and I would have less spasms and contorting. I still take it and it has really allowed me to function well in daily life.

Recently the Dystonia has spread all the way to my neck. My left hand is now affected and it has spread to left my foot. A few months ago, the doctor told me my foot was so badly mashed from years of walking incorrectly that it would need an AFO brace/prosthetic part. I thought this was a bad thing … until I wore it. I could finally walk with my left leg!

Throughout the years I have learned that even though there is no cure for Dystonia, there are small improvements that doctors find. In my daily life, I have found things I could do. I focus on those each and every day, because each day is a battle. I try my best to do my part with helping find a cure and informing people about this disorder. It changed my life, but it changed me in a way that helped me find what truly makes me happy.

*To learn more about Tonic for the Dystonic and our cause, visit our Facebook page. If you are new to this blog, please stay involved and show your support by donating, subscribing, or sharing our cause with your friends!

 

Are YOU a Dystoner?

An article about Tonic for the Dystonic was recently featured in BYU's school newspaper, The Daily Universe. Local exposure is so important to our growing organization and we look forward to more opportunities like this in the future. More importantly though is the fact that this article was another tool used to help us demonstrate our most important goal: raising Dystonia awareness. We are so grateful for all of our supporters who are actively involved in helping us spread awareness for our cause!

 To learn more about Dystonia and Tonic for the Dystonic, read the article that appeared in the Daily Universe here.

Dystoners Caught Cleaning Up Their Act

She was the epitome of  "grandma". She pulled into the Walgreens parking lot and parked her large car behind an SUV whose color was quickly changing from a reddish-brown to a newly discovered white. As she rolled down the window, her soft eyes and light grey hair were ornamented by a gentle smile. "Are you gentlemen doing a car wash?" Her Belgian accent caught me off guard, but as I got to know this sweet lady, I then realized that we were doing a lot more than just cleaning cars...

Many people, like this elderly lady, have never heard of Dystonia. Through the car washes held in Provo and Saratoga Springs, we were able to raise over three hundred dollars. But just as important as raising money, is raising Dystonia awareness. While washing cars, we were able to inform people about Dystonia and our efforts to raise money and awareness. Armed with an informative pamphlet and a positive experience in meeting our team of Dystoners, these individuals now possess not only shiny bright cars, but a brighter understanding of Dystonia. We would like to give a special thanks to everyone who supported our efforts in these car washes!
Dystonia is a painful degenerative neurological disorder. "Degenerative" means that it can get worse over time. Also, there is currently no cure for Dystonia. Please help us spread awareness! If you are new to this blog, please stay involved and show your support by donating, subscribing, or sharing our cause with your friends!

Awareness Ad: Mini Golf Trick Shots

A group of "Dystoners" got together and made our very first Awareness Ad. This mini golf trick shot compilation is 100% original from the music to the shots themselves. Although mini golf has very little to do with Dystonia, this fun video has already boasted almost 10,000 views, helping to raise awareness! It was great seeing it featured on KSL.com's homepage (A local news agency in Salt Lake). Keep this snowball rolling and share the link with your friends!

YouTube:

http://youtu.be/EmRRPbpdnrM

KSL:

http://www.ksl.com/index.php?sid=16965702&nid=1017

My Story: Aubrey

(Aubrey and Her new Husband)

A typical 11-year-old girl, I’m riding shotgun in my mom’s minivan, resting my bare feet on the dashboard that I can barely reach with my pre-growth-spurt legs. I’m into soccer, movies, the mall, and wanting to be a teenager. My teeth are preparing for braces and my attitude is preparing for the regular back-talk that teenage girls dish out to their parents on a regular basis. Of course, I like to think I’m too sweet for that.

My mom looks over and notices my toes are sticking straight up, perpendicular to the angle of my foot.

“Aubrey, your toes are standing up,” she noted.

“Yep. They are. That’s weird, I can’t move them,” I responded.

“Well can you try?” she asked with a more concerned look.

“I am trying.”

We spent the next 24 months visiting eight different doctors, trying to get a diagnosis. It wasn’t Hammer Toes, like the first doctor thought. The strange stiffness that grew through my feet and legs was called Dystonia …

I wasn’t soaked in worry with the odd discovery of my toes at first. Maybe because I was 11 years old and didn’t understand the magnitude of the situation. But as more and more doctors excused themselves from my visits to consult their medical journals and colleagues, I realized that my condition was unique. Heck, they’re doctors. Like most of America, I was raised to believe that they know everything! I was starting to doubt if I would ever an answer as to what was wrong.

Eventually, the spasms became more frequent as they spread up my leg. By the time I started high school, the pain of my spasms was so severe that I had to remove myself from all high school sports, which killed my soccer-loving soul. I could barely write. And some days I couldn’t even walk. My disorder had spread like wildfire and I still had no answers. The doctors ran a battery of tests to figure out what was wrong with me.

Finally, the answers came.

Dr. Vicki Wheelock, the eighth doctor to take a stab at diagnosing the stabbing pain in my limbs, asked me to draw a spiral on a piece of paper. She instantly diagnosed my disorder based on my inability to draw a spiral. It’s a degenerative neurological disorder called Dystonia.

Right away I started researching Dystonia to see if I could ever get back to playing sports or becoming a normal teenager again. Much to my dismay, the word “degenerative” only meant that it was going to get worse over time. There are certain procedures that can be done to help alleviate the symptoms, but there is no cure for Dystonia.

No cure. It was like a death sentence. I would never perform simple tasks like drawing a spiral ever again. The thought of that loss threw me into a major depression for a few years after the diagnosis. I found myself coping with my pain by overusing my pain medication. I was living a life that I wasn’t proud of and I eventually hit rock bottom. I had to make a choice: Was I going to let Dystonia ruin the rest of my life? No.
I finally ditched the depression and started helping myself, bettering myself. My personal and physical strength grew in ways that most teenagers never get to experience. I matured quickly. I soon outgrew the need to play high school soccer and I thought less about being the popular girl. I only thought about how to manage the spasms and pain. I found strength in attending classes that focused on pain medication alternatives. Instead of dwelling on the pain, I focused on beating the pain.

I’m 22 years old now and Dystonia still affects my life daily. My walking is slower than ever. My handwriting is so illegible that I rely on a computer for writing. The pain remains constant, as does my drive to rule Dystonia and not let it rule me.

My life changed the day I had that first foot spasm in the car, but I wouldn’t trade the knowledge, the pain, the spasms, or the Dystonia for anything. It enabled me to find strength in my weaknesses. It also enabled me to help others who might struggle, which is exactly why I am getting my story out there. I want people to know more about Dystonia. I want them to get involved in helping us find a cure.

I know that Dystonia is rare, but so are the good people willing to help.
Become a Dystonia Supporter – a “Dystoner” – today and help raise awareness and funds for research.

What is Tonic for the Dystonic?

Tonic:

1. (Medicine / Pharmacology) a medicinal preparation intended to improve and strengthen the functioning of the body or increase the feeling of wellbeing

2. anything that enlivens or strengthens

Dystonia:
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily.

Put them together and you get a non-profit organization that seeks to strengthen and provide aid for those with Dystonia.

Please help us raise awareness and funds for this great cause!

What is Dystonia?

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no less than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person's life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

Information supplied by http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php