I would like to share my experience with Tourettes Syndrome in the hopes that I can be an encouragement to others who may be suffering. I am not ashamed of having Tourettes and I believe being open about it will only help to chip away at the unfortunate stigma. I am happy to answer any questions you may have and would love to share more if you are interested. Just email me!
When I was about seven years old, my parents started telling me to, "Stop that." "Stop what?" I'd ask. They wanted me to stop scrunching up my nose and mouth. Apparently, I did it all the time. Eventually, they took me to the doctor who said I was "nervous" and I would probably out grow it. In the mean time, I was repeatedly reminded to, "Stop that!"
I remember being in third grade and getting ready to walk home from school. The trip was about 6 blocks. I stood on the steps of my school and vowed to myself that I would make it all the way home without once scrunching up my face. I would scrunch real hard a bunch of times - sort of like taking several deep breaths right before attempting to swim the length of the pool under water - and then set off. I walked quickly. I made my attempt many, many times that year....but I never succeeded.
Then one weekend I was invited to a school friend's sleep over. I was so excited! The whole class was there! Everything went just fine at first and I was having fun. After a really fun party where I finally started to think some of the girls really liked me, I fell asleep. Some time in the middle of the night, I awoke to the entire group of girls, hovered over me, mimicking my facial tic. When they saw me open my eyes, they all burst into laughter. I still remember the burning sensation I felt in my face as I crawled into the bottom of my sleeping bag to hide from them. I felt humiliated. I stayed buried in my sleeping bag until the birthday girl's mom made me come out for pancakes. After breakfast, I sat quietly by myself until my mom picked me up. On the way home, I turned my face to the window so she couldn't see me crying. I never told anyone about it. But I never did my facial tic at school again.
I clearly remember the day my body tics started, (or at least the day I noticed them). I was 13, and walking home from school. (not my favorite time of day!) I raised my right shoulder and felt a little click. I raised it again, and there it was - a funny little click. (It turns out there are a few irregularities in my scapula bone that cause a muffled clicking sound as the muscles pass over them when I move my shoulder.) So from that day forth, I've been "clicking" my right shoulder. But it didn't stop there. My "clicking" eventually radiated to the entire right half of my body, my arm, side, back, hip and thigh. (I never tic my left side.)
So now my parents were constantly telling me to stop "clicking" my shoulder. "Relax," they'd say. "Stop clicking." I tried. For years and years, I tried. But it never happened. Little did they know that I was "clicking" much more then the shoulder they could see moving. I remember when I was about 17, I was in a singing group with my mom and sister and had the opportunity to do a duet with another singer while we each played our guitars. After the performance, our group director commented on how I must have been very nervous because I was so fidgety. My dad told me my shoulder and arm were ticing noticeably the entire duration of the song. I felt so embarrassed and ashamed. Why couldn't I just stop it?!
I eventually got married and had kids, but I never stopped ticing. Because I had learned not to do facial tics in public, and because my body tics are mostly just muscle tensing, most people never noticed them. But now I had my husband saying, "Stop that," whenever he did noticed them or when he felt my movements as we were sitting next to each other on the couch. And I was in more and more pain as the muscles I ticed became sore and inflamed.
It so happened that one day, while I was having my teeth cleaned, (and ticing away!) my dental hygienist noticed my shoulder shrug, asked me about it and then advised me to see a doctor. At the age of 30, I had finally had enough and I took her advice. I made myself an appointment with a neurologist who specialized in movement disorders. That is when I was finally diagnosed with Tourettes.
After my diagnosis, I did a lot of research and finally came to understand that my tics have nothing to do with being "nervous" and that it is not my fault I can't stop them. It's not a weakness of my character as I had always believed. It's a genetic defect in my brain chemistry. I eventually learned that tics, OCD, ADD and anxiety are all in our family history. (These disorders are co-morbid. This means that they are some how related to each other and often found together in the same person and/ or family.) These are things that I had never even thought about before. It was a rude awakening, but a blessing to finally know the truth. I could stop blaming myself.
Now, at the age of 48, I am still ticing away. I wish I could tell you that my Tourettes has been cured or that I did "grow out of it" or at least that as I got older, it got better. I can't say any of those things. But I can tell you that I am living a successful, productive and happy life with Tourettes, as most people with this disorder are able to do. I've gotten used to it. I've learned to adapt and cope. Most people I know don't even know I have it. I do not keep it a secret though. If the subject comes up, I share. Or if my pain is bad, I might share about that with a friend.
I believe that early diagnosis and education are so important. Parents should be honest with themselves if they notice a child blinking or ticing frequently for more then a few months and be willing to take the child to a specialist in movement disorders. It is clear from my story that I would have been spared much emotional pain during my childhood had my parents been given better advice when I was seven years old. It would have helped me so much just to have had an understanding of what was happening to me. It is really very important to make an effort to understand any physical or mental problems that run in one's family. Now that I am educated, I can pass that knowledge on to my children and they to their children so that problems can be diagnosed and treated early. It is my goal that no one in my family will ever feel the shame that I felt again.
WHAT DOES MY TOURETTES LOOK LIKE?
I have many facial tics: nose scrunching, blinking, mouth movements and sniffing, but like I wrote above, I don't do them much while in public. I scrunch like crazy when I'm alone though! I tick my head and neck from side to side. I tic pretty much all the muscles on the right side of my body, from my shoulder, my arm, my upper back and chest, side, abdomen, thigh, and rear end. Most of this ticing is simple muscle tensing, but sometimes, I raise my shoulder, or raise my elbow out to the right.
While most people don't notice my tics because they are not severe in type, the fact is that they are severe in frequency. I tic hundreds of times an hour and therefore am very sore almost all the time. I have bouts of ticing so bad that one tic runs into another and my muscles just freeze in continuous tension. It is very painful. The worst areas are my shoulder, upper arm and upper back. These areas have been ticed so much for so long that they are in an almost permanent charlie horse and at the very least, feel tight and sore 100% of the time.
My ticing is at it's most severe while I am driving, while I am in a group of people such as a party or bible study, and while I am under any kind of stress. It is at it's mildest while I am concentrating hard on a project, while I am working on the farm, exercising, hiking, or of course, sleeping.
COPING STRATEGIES THAT WORK FOR ME:
- Get lots of sleep! Being tired makes my tics much worse!
- If the tics get too bad, take a nap! When I just can't take it anymore, I take a nap! It's wonderful to know that as soon as I'm asleep, the ticing will stop. When I wake up, they are usually a little better.
- Take a hot bath or shower or use a heating pad. I usually don't tic much at all while in a hot bath or shower and when my muscles are painful a heating pad or hot bath can be very soothing.
- Get lots of exercise! It helps a lot.
- Stay away from caffeine. It definitely makes my tics worse.
- Wear loose fitting, comfortable clothing. Tight, or uncomfortable clothing or bras or too many layers can make my ticing much worse.
- Pray. There are times in my life where I've prayed for relief and God has granted me a season of milder ticing.
- Remember those who fare worse. There are many disorders, diseases and disabilities I would not trade my Tourettes for. Many people have to deal with much worse difficulties. There, but for the Grace of God, go I, and I am eternally grateful.
- Read the Bible and BELIEVE what it says.
As a mother comforts her child, so I will comfort you.
I can do all things through Christ who strengthens me.
SUCCESSFULL PEOPLE WITH TOURETTE'S
Ed Buckner - Today's TMJ weather man in Little Rock, AR
Jim Eisenreich - Major League Baseball player
Michael Wolff - American jazz pianist, composer and actor.
National Tourette Syndrome Association
Tourette Syndrome Plus