Emily Chaconas

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My name is Emily Chaconas and I want to thank Howard for asking me to share my story. I am 32 years old and live in Frisco, TX with my 2 adorable golden retrievers. I have a great sales job that I have been doing for 8 years. Things were going great for me until August of 2007 when my whole life changed.

I woke up one morning and went in the bathroom to brush my teeth. I will never forget what I saw. My head was rotating to the right without me telling it to. I kept staring in the mirror, thinking, “This is very strange.” I would bring it straight, and it would then rotate to the right and up. I could not control it. I thought, “Maybe I have a knot or crick in my neck,” and then just went about my business. The next day I noticed it had not gone away. About another week went by and I noticed that I was really starting to lean right, but also starting to feel pain.

I decided to go see a chiropractor. He was a well known chiropractor in the area, but I remember him looking a little baffled when he examined me. Even though he said he never saw this before, he told me that he could help.

I must have gone to see him every day for about 3 months. He took X-Rays but found nothing wrong. We tried everything from adjustments to energy work to massage to all kinds of gadgets. My neck started getting worse. Not only was it tilting, but is was now pulling. Even though he became more and more confused about what to do, he kept re-assuring me he would fix it.

I then sought out a C2 specialist; she was a chiropractor that supposedly helped with neck problems such as mine. She proceeded to lay out a plan that would require me to come in 3 times a week for a year costing me about $4000.00! I was desperate so I signed on. All she did was use this small clicking device on my neck (I think called an Activator) that was supposedly going to straighten my neck out. I went to her for a few weeks, but got no relief so I stopped treatments. I then went back to my original chiropractor and he said everything that what my new doctor had done was wrong. This comment was surprising to me considering he was not able to help me either. The reason I went back to him was because I was desperate and still hanging on to the trust he gave me that he might be able to help but, unfortunately, he was still at a loss.

At this point I was extremely frustrated and the slight tilt of my head turned into painful spasms. Every night I would search the internet to try and find out what was going on, but I kept coming up empty. I then went to an orthopedic surgeon. He also had no clue what was wrong. He ordered an MRI and CAT scan. The results were negative. By now I am sure this is sounding all too familiar to what many of you have experienced.

After seeking out all kinds of doctors and becoming more frustrated than ever, one night I just lost it. I couldn’t stop crying. I got on the internet yet again, but this time I Googled something different; “NECK SPASMS”. That was a changing moment for me.

I found www.spasmodictorticollis.org and started reading like crazy. Everything was starting to come together. I was reading all of these stories and everyone’s symptoms were almost identical to mine.

I then read one story that especially touched me. It was Tom Seaman’s story. Some of you may have also read his story or know him from various support groups. He had a pretty severe case of ST, yet battled through, and the way he described his journey really touched me and one I could relate to in many ways. I immediately sent him an email with a picture of my neck.

Tom responded the very next day with all sorts of information about ST for me. I then called him and he assured me that this was not a life sentence, that there were ways to treat this and reduce my symptoms and he offered lots of ideas and suggestions as to what to do from this point forward. He really tried to put my mind at ease which was what I really needed most at that point.

So I had made a new friend (halfway across the country) who could relate to me and someone that was willing to help me, BUT this was just the beginning of my new journey. After the initial relief of finally knowing what was wrong I was still very scared.

What was this thing called ST that I had? Why did I get it? Was I then going to get something else like Parkinson’s? What was happening to my world?! I remember asking Tom these very questions and while he answered me and assured me things would eventually get better if I took the right steps. I was so overwhelmed that I didn’t even really hear what he was saying.

Words cannot describe the emotions I felt. I was an All American Girl; A workout maniac; A busy sales person; A go-getter! I was the one that made things happen! I was the one that looked after others and motivated others to succeed when they were down! Now, a disease had latched onto my body that was not only painful, embarrassing, awkward, limiting in so many ways, but worse, something so few understood. I had become the one who needed help….a place I didn’t recognize and a place where I denied being.

Of course I thanked God that this wasn’t life threatening, but that still didn’t ease my fears. The fact that this was such a rare disease made it that much scarier for me. I remember my father taking me to my first neurologist. We were hopeful that she would provide answers and solutions. But, sadly, the doctor’s appointment ended up being me explaining to her what I had, and, at this point in time, I knew little to nothing about ST! My father was shocked and I was numb.

As we drove off, I knew 3 things. I had ST, I had one new friend (Tom) that I would be latching onto for dear life and I was in for one of the biggest battles of my life.

Not only was Tom helpful with the physical aspects but he also taught me about how to handle the mental and emotional issues that come with ST. There really aren’t enough words to describe all he taught me so I will try to sum them up the best I can. For a long time, none of them made much sense to me. Not until I began to see the difference in me did I fully embrace them and finally understand what he was talking about. Had I done so sooner, I might have been able to avoid certain obstacles but we often have to go through personal hardship and pain to learn things.

1. Respect my ST and know my limits. Learn to listen to my body.
2. Educate myself about ST as much as possible and become my own health advocate.
3. Understand that this is a journey that requires patience, consistency, and trial and error.
4. Trust that I will get better if I follow the right path that works best for me.
5. Do not become self involved or sheltered. Get involved with support groups. Seek help from others and learn how to help them as well. Helping others is a big part of my own healing.
6. This is not the end of the world by any means but a blessing in disguise in many ways.
7. Stop asking “Why me?” and start asking “Why not me.” That certainly changed how I viewed things.
8. Pray

These are just a few of the many things I learned, all of which were things that were necessary on my path to recovery.

After urging me to learn more about ST and to get connected to Howard’s site and other people, Tom suggested I then contact Abbie Brown at the ST Recovery Clinic in New Mexico. At this point I was open to anything, so in June of 2008, my mother and I packed up the car and headed to New Mexico. Abbie was incredible. She made me feel safe and secure and gave me hope that I was going to be OK.

That week I learned many different stretches, exercises, nutritional information, and, most importantly, the do’s and don’ts of ST (day to day things that will make my symptoms better or worse). Abbie is a wonderful woman who has devoted her life to helping those with ST. To this day she remains a good friend and inspiration.

I wish I could say that the second I got back I jumped into her program and got better right away. This was far from the case. When I got back, I became EXTREMELY depressed. It was as if it had really sunk in and hit me that I had this battle that I may have to fight for as long as I live. It seemed too big of a challenge and I was in so much physical pain on top of it all.

My days consisted of being up all night, getting up around noon, holding my head as I walked as I paced anxiously around the house, calling Tom and crying and having horrible anxiety and panic attacks. I would try to continue doing some sort of cardio exercises even though it was not recommended and made me worse; I basically tried to ignore my ST to the point that around 7pm every night, for many months on end, I would start drinking.

I would drink about 8-10 beers a night. I thought at the time that the alcohol was making me better because it made me “feel” better, so I looked forward to my nightly ritual. Boy, was that a mistake! The alcohol only worsened my mental and physical state. Everyday I would become more anxious and more depressed. Not only was I dealing with my head jerking to the right, but I was now dealing with an alcohol problem. My work began to suffer, as did my friendships. At this point the only friends I had were my parents, my dogs, Tom, and a few others that I would talk to on the phone but was too anxious to go visit. I became extremely sheltered.

I was not doing what Abbie or Tom taught me or anything else beneficial for that matter. I became very self destructive. I look back and think a big part of it was me rebelling and denying my ST, and drinking took me away from having to deal with it. I was a wreck. My parents were a wreck. Life was heading downhill very fast. I was not praying anymore. I was mad at God and didn’t understand why He would let this happen to me.

My anxiety had gotten so bad that I could not even go to the store without taking Xanax. People didn’t even recognize me. I was so depressed and scared. I was not the Emily that everyone knew. I was not the Emily that I knew. Thank goodness I was able to still get by at work because my job allows me to work from home. I am very blessed for that!

My father was constantly researching doctors and new treatments. Ironically, Tom and my father both found the same doctor in Dallas where I live. His name is Dr. Richard Dewey. Dr. Dewey is one of the doctors in the US that specializes in ST. My father and I went to see him. He was incredible. He listened to my story for 2 hours and confirmed that I did have ST, and knew exactly what it was and what to do about it! YES!

The first doctor to really know what this was about! He did Botox injections that first day. I remember hearing the sounds in the machine as my spasms caused it to practically make sirens in the room. My father and I couldn’t believe it.

After the first round of shots I didn’t notice much relief so I still continued with my bad habits. Around March 2009, things hit rock bottom. My drinking was at its peak, cigarette smoking was bad, and my friendship with Tom was in ruins. I had gotten to the point where I really didn’t even want to leave my room. My parents were so concerned at this point they practically forced me to see a doctor for my depression. I did and was put on 10 mgs of Lexapro. This was something I didn’t want to do, but thank God I did. A few weeks later, I started to feel well enough to get out of the house little by little and further and further away from my comfort zone. I somehow still managed to win Presidents Club at work that year, so my friend convinced me to go to Mexico on the reward trip. I went from feeling like a prisoner in my own home to flying to Mexico! Since that trip, my life has completely turned around and I am so grateful to her for being such a big part of that! I knew I had to make this big leap for anything else to change. I was terrified to go, but I did it!

When I got home from Mexico, I made a firm decision. I was finally ready after a year and a half to take this seriously once and for all.

I started eating better. I totally cut out sugar and increased my protein intake. Tom suggested many other changes to my diet which made a huge difference. I also stopped drinking every night. I will still have a few drinks on weekends occasionally, socially, but I don’t desire it or “need it” anymore.

I also really started responding very well to Botox and that allowed me to do Abbie’s program much more effectively. I actually began to respond to it before I went to Mexico which made the trip more tolerable. One of the most interesting things that I found I could do even at my worst, was still dance! It amazed me. I had a hard time sitting in my desk chair but, dancing, forget about it! I could dance all night long and not have any trouble. I suppose that is just one of the mysteries of this disease.

Tom told me that it might be because, 1) music relaxes me and takes my mind off my ST and 2) when I dance, I engage certain muscles that disengage those muscles that contribute to my ST. Something similar happened to him when he was in rough shape. When he walked his neck severely pulled, but if he threw a tennis ball back and forth from one hand to the other, his neck would straighten. Having a background in aerobics, yoga, and exercise training, it made sense to me because we have protagonist and antagonist muscles. For example, when you flex your bicep, your tricep relaxes, and vice versa. I have to imagine that something similar is happening with my muscles when I dance. I mention this because there may be some activities you might want to try that could have the same effect. Also, for those who know more than I do about exercise physiology (which is not much), this might be an interesting area of study for you to see what could be done to benefit STr’s.

Around May 2009, my neck was about 90 percent better, but I was still left with anxiety and depersonalization (a form of anxiety), agoraphobia and a fear of driving. This was so bizarre, as I used to live behind the steering wheel.

I then began getting counseling and started reading many books on anxiety. I have learned to embrace anxiety and accept it. I have learned what causes the symptoms and that they are harmless. For me, controlling the anxiety was just as challenging as my ST, if not more so. I still have to work very hard at it all everyday but I have come so far and am happy to say I feel so much stronger now then I did before ST and, before ST, I thought I was super woman, if that tells you how good I feel now.

I now have more compassion for others, feel more secure with myself, have grown spiritually and learned to be content with myself. I also learned to not take life for granted because, on any given day, I could wake up with a new challenge such as ST or worse, BUT I now know that it does not define me, nor will it defeat me, unless I let it. We have control over this. As Tom once told me, “whatever we think, we create.”

I am happy to say that I am back on the road doing my sales calls, socializing more than ever, dating again, working out everyday, cardio, yoga, you name it! My spasms are practically gone and I celebrate my accomplishments more than any other in my life! ST taught me and still teaches me so much about myself and about life. Tom was so right when he said that my ST was a blessing in disguise!

I also wanted to mention that when I was 8 years old, I was diagnosed with Attention Deficit Disorder. My doctor put me on Ritalin and then, as I got older, I switched to Dexedrine. This is a stimulant medication that became extremely popular back in the mid-80s. I mention this because I have a very strong feeling that taking those medications for over 25 years could have contributed to my getting ST. I don’t know this for sure but I have a strong feeling it did. So if any of you are taking these types of meds or have your children on them, you may want to reconsider or get a second opinion. There are many natural ways to deal with ADD and medication can often do more harm than good. If you would like more information about effective alternatives for dealing with ADD/ADHD, please feel free to email me.

My hope for all of you is that you will learn from my mistakes and from my accomplishments. Don’t let ST take your life away. Walk through the new doors that ST opens that will change you for the better in so many ways. Allow all the wonderful people in the world with and without ST into your life. Don’t let ST stop you from doing anything you want to do. Embrace life and thank ST for serving as a reminder to do that. It is easier said than done, of course, and is a process that takes time, but with faith, patience, a good support system, good doctors and a willingness to never give up, ST can open doors to a new world you never knew existed that can be rewarding in many ways. It took me almost 2 years to start realizing this and I am so thankful to be learning more each day. I still have hard times as we all do, but I no longer live in that dark world I once did that I never thought I would get out of. You don’t have to either. There is a way to keep from getting into that dark hole and if you are in one, there is most definitely a way out. There is a great deal of support around you if you choose to go after it. As Lee Iacocca said, “You don’t get anywhere by standing on the sidelines waiting for somebody else to take action.”

I want to thank Dr. Dewey for his help, my parents for their incredible support, Abbie, for teaching me everything she knows, Marcus, my massage therapist, for all of the late nights he would rub my neck and help me relax, ST/Dystonia for all of its incredible information, Roseanne, another ST’r, for her support and the tools she lent me to help me get better, and my dear friend Alan who has always been by my side as a source of strength long before and after I got ST. But most of all I have to thank Tom for his patience and just the incredible, giving person he is for walking me step by step through this journey!

Don’t let ST get the best of you. GO GET THE BEST OF IT!!

Emily Chaconas
Frisco, TX
echaconas@teletrac.net

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand