I Used To Read The Stories Of Hope Almost Every Day On The ST Website

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(Ed. Note: A great article on hope through neuroplasticity follows.  The editor of it wishes her last name remain anonymous. Thanks Shannon for volunteering your information.  I’m sure it will provide lots of hope.)

I would read and re-read them,
thinking… if some people have gotten through this, I will too.  Although, I wasn’t always that positive. I was in a very dark place when my dystonia started.  

My journey is like most of the stories I have heard and read.  Starting off with strange symptoms I couldn’t explain while I was pregnant with my son, which progressively got worse after he was born.  Anxiety and panic set in about “what was going on??”, and then depression set in.  I couldn’t drive, or look after my children, I felt paralyzed by what was happening to my body.  I was so sad, lonely and ashamed.  

I was lucky to get a diagnosis very quickly, but nothing worked; physio, massage, Botox…nothing.  So, I, like many of you, did my own research, and was determined to find something that would help me.  First, I did a very specialized type of chiropractic called NUCCA, which found huge degrees of rotation in my top two vertebrae by using a very precise x-ray.  I had many accidents and falls in my history which caused this misalignment.  It was corrected with a very gentle adjustment and weeks later my tremor stopped.  I also had a dental appliance made to support the alignment of my jaw.  I was still very stuck and crooked, not being able to turn my head.  I could sleep better because the tremor was gone.

I then found Abby’s program (ST recovery clinic).  I started the program, and was faithful, doing the exercises every single day.   What helped me the most was having something productive I could do myself and not relying on others to fix me.  I remembered, “if others could do it, so could I”, thinking of people who have recovered.  I slowly started to get better over 7 months, it was slow, but it was progress and it gave me hope.  I started to look after my kids again, and find joy.  I worked so hard and was so dedicated to getting well.  I still thought I could get more progress with some Botox even though it didn’t work the first 3 times.  

I then found Dr. John Roberts in Seattle through the ST website, and went to see him.  Previously the Botox was done without EMG here in Canada.  Dr. Roberts used EMG and within days I could feel the difference and within a week I was straight again with full movement.  It felt like a miracle.  It made such a difference in my mood and having hope that this treatment worked.  It had some shortfalls, such as weakness in my neck and jaw, and my neck got tired very easily.  But, I felt amazing, and it was a very good solution.

My friend came across the article about Dr. Joaquin Farias’, and I began to research his work.  I had been doing so much reading about the brain and changing movement patterns so his work made total sense to me.  I was hesitant about going because of the cost and the Botox was still working.  I was convinced by family to go, and the worst was “it won’t work.”  I went and learned so much about dystonia, and how you can retrain the brain (not easily, but it can be done).  At this point I was still doing Abby’s program and saw many parallels’ to Dr. Farias’ exercises.  I began his program, and was faithful to it.  I did this in October and was due for Botox in January.  I called the clinic in January and said I don’t have any symptoms I will come in February, I called in February and said I don’t have any symptoms I will come in March.  March 2016 turned into March 2017 from where I write this today, having Botox 18 months ago, and still having no symptoms.  

I am back at work, looking after my two busy boys and am grateful for my health every single day.  I am grateful to every single health practioner that helped me along the way, but mostly grateful to my husband for being there, my family for helping me in huge ways and a few good friends who walked this journey with me.  

Your journey won’t look like mine, but I do believe hearing about others who have recovered helps with HOPE.

Shannon
dystoniayyc@outlook.com

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