Dystonia – Curious? Take a peek.

I have Dystonia but won’t give up the fight.

Dystonia is a neurological disorder that causes muscles to contract involuntarily. You can read more about it at the below foundations/websites. I blog often about my Dystonia to raise awareness and it helps me through my own emotions and struggles.

I am very passionate not just about this disease but about health in general. I want to make a difference and help others going through the same type of situations. Through this blog, running, and Dystonia Advocacy Day in DC, I hope to continue to spread the word.

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Dystonia Foundations: 

Dystonia Medical Research Foundation 

Michael J Fox Foundation

The Bachmann-Strauss Dystonia and Parkinson Foundation

ST/Dystonia

First article I wrote for the ST/Dystonia magazine. Howard runs the foundation.
Recently I was speaking with Howard and he asked; “To what do you attribute your success towards recovery?” It made me pause and think. There are so many things; the love of my parents, the support of my friends, my spirituality, Botox, Abbie’s program, physical therapy, positive thinking and living, nutrition, meditation, etc.  As I thought, I realized that physical therapy is what brought me to each of the other things – it is like the trunk of a tree and everything else branches out from there. My answer is what prompted this article. I was diagnosed with Cervical Dystonia (CD) in March of 2007. While I was relieved to finally know what was going on, I kept thinking, I have a DISEASE?!
Like the majority of us, it took about a year for me to be diagnosed. My journey starts with a man pushing me down hard enough to break both bones in my arm. I had to have surgery to put a plate and seven screws in my wrist. This traumatic event is what triggered my CD. Within a couple months from the time of the surgery is when the pain and pulling started in my neck. From March 2006 to March 2007, I went to endless doctor appointments, physical therapy, chiropractors, had steroid injections, met with a surgeon – who of course thought I needed surgery. Everybody had ideas on what was wrong and how they could fix me but I was not getting any relief. I didn’t feel right about having surgery so I asked my internist to refer me to another surgeon. I wanted a second opinion. I think I kept searching and pushing because deep down I knew something wasn’t right. I couldn’t control the muscles in my neck. Therefore, I couldn’t control the position of my head. The second surgeon would be the one that finally diagnosed me, Dr. Thomas Bergman. He looked at me and said – “You don’t need surgery, I will be right back.” He left the room and came back with a medical book (I swear it had dust on it). He said “this is what I think you have.” He showed me pictures. I remember I could hardly look at the pictures but I knew he was right. From there I went into a little bit of shock, kind of that out of body experience. He referred me to a neurologist who was right across the street and surprisingly he could see me right away. I met with him and after watching and speaking with me for just a few minutes, he confirmed Dr. Bergman’s diagnosis. He told me that we needed to do Botox injections right away. I didn’t even question him, all I knew was that I wanted to feel better and be able to hold my head straight. Looking back, I am thankful that I started right away with Botox – it took away the pain and twisting enough so that I could continue to work. I went back to see Dr. Bergman six months later – he couldn’t believe the difference in me (Which at the time, I couldn’t see). He commented on how lucky we are to have Botox and what a wonderful breakthrough it is, I have to say that I agree with him now. I appreciate Dr. Bergman, a surgeon that didn’t just want to do surgery; he took the time to really diagnose me. In the next six months, I started doing a lot of research about Dystonia. I found the ST/Dystonia website and contacted Howard. Howard was my first ray of sunshine. He made me feel like everything was going to be okay and that I could live a normal life. He got me in touch with the best movement disorder doctor in Minnesota, Dr. Dykstra.  Once I met Dr. Dykstra and his team, everything started to turn around for the better.  My first neurologist didn’t use an EMG machine. Dr. Dykstra does and that made a huge difference with my injections, he also cut my dose in half – again HUGE.  Dr. Dykstra and Tanya (the clinic manager) told me to put together a team to treat my Dystonia. As part of my team, they told me to find physical therapists that do manual therapy. This is how I found Brian and Linda and where my true healing started and continues. Brian and Linda Cohee Caledron own Rainbow of Health in Brainerd, Minnesota.  They specialize in Myofascial Release and other manual and movement therapies.  They treat each person as an individual and create a unique care plan for not just the body but the mind, heart and soul too.

 

I knew on my first visit that Rainbow of Health was different and special for many reasons. It is a cozy, warm home with calming music playing – it is one of those places that when you walk in, you instantly relax and you just want to stay awhile. After my first treatment, Linda told me that she would be as committed to me as I was to getting better. That statement resonated with me, it made me feel that we were going to be a team, that she wouldn’t give up on me as long as I was putting in the work and that she did believe I could get better. Brian, Linda and their team gave me hope.

I have been going to Rainbow of Health now for a little over a year and it has been the most profound year of my life. Brian, Linda and their team truly do use the holistic approach. We have done Myofascial Release, Cranial Sacral Therapy, specific stretches, pool exercises, Reiki, they have a library of books and movies that they have recommended to me and allowed me to check out.  Through the different therapies, as we worked on my muscles, we also worked through my emotions. I have been able to release anger, fear, sadness, and guilt.  By letting go of the negative emotions, I made room for the positive ones…forgiveness, love, acceptance, and happiness which in turn has allowed the process of healing to begin. They taught me to quiet my mind so that I could focus on healing and empowered me to trust my intuition. I learned how to listen to my body and give it what it needs.  Once I slowed down and listened to my body, I understood the different things that made me worse and what was helping me.

This is why I said that Rainbow of Health is the trunk of my tree.  Through them, I learned about the holistic approach to healing which is where all the other branches began to grow.  I opened my mind and heart and because of that I was able to accept the support and love of my parents and friends without guilt, I found my spirituality – which has been a true light for me, guiding me every day, I accepted the Botox and how it was helping my body instead of fighting it, I understood how Abbie’s program could be part of my routine, and through the many books they recommended – I changed my way of thinking into a positive one.

I have learned a lot this last year but also realize that this is just the beginning of my journey with CD– like Linda always says – Life is a journey NOT a destination. I always try to remember that and live in the moments, not in the future. Once I surrendered to that, life was so much easier. I know this is hard and for us with CD, it is difficult not to worry about the future or even worry about a moment, a moment when our pain is going to kick in or our neck is going to end up in a crazy position.

I also realized that I was expecting instant gratification and for someone else to fix me. The truth is we need to fix ourselves with the HELP of others, and allow ourselves the time to heal. Another lesson for me. Also, being diagnosed with a disease – I believe that we go through the five stages of grief, because it feels that we are losing a part of us -Denial, Anger, Bargaining, Depression and Acceptance. I think it is important to go through each stage, feel it and then move on, move on to acceptance. I think that is the key to Recovery. Recovery is something that I work on every day, it is the journey – it is a lifestyle.

I now see my CD as a blessing. I am a different person because of it. Before I was a pinball in a machine bouncing all over, bouncing off other people. I wasn’t living with purpose. I now live with purpose, a more balanced life – a healthier life. It is like Tom said in his article; life is 10% what happens to you and 90% how you react to it.  So much of recovery is living by those numbers.  I am still in pain, but I choose to respond to it differently.  I want to say this to everyone because I believe it is so important not just to work on your body – work on your mind and your thoughts too. It truly has helped me.

Please remember it is so important to be our own advocate, if you are not happy with your doctor – find another one!  Seek out the people that can help you, inspire you, and motivate you.  Remember that you have choices and put together YOUR BEST TEAM! Don’t ever give up – I have tried many different things, I still do. Each of us is unique and we need to find what works for US. Be bold, always have faith and believe!

My plan is to grow into a big strong oak, putting roots down into Mother Nature and stretching my branches out into the universe.  I might have a couple twisted branches but that is what is going to make me special and stand out amongst the other trees.

The sky is the limit for all of us – let’s build a beautiful forest!

I want to thank Brian and Linda for creating such a wonderful, safe place for me to heal. For seeing the things that I couldn’t and for opening my eyes.  I look forward to continuing my journey with you.

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