Monday, 18 September 2017

My Journey with Dystonia

I am writing this in response to a request to share more details about my experience with cervical dystonia.

Right now, I would say my symptoms have improved by about 95%, which is great considering my neurologist said he could only guarantee about 70% improvement in symptoms with Botox.  I no longer have neck spasms and only have slight tremors when turning my head to the left or tilting my head to the right.  I find turning left slightly awkward, mainly in social situations.  My eyes still have some slight abnormalities.  I still have really tight muscles and I am still working on remembering to breathe deeply especially when I'm anxious.

Although I wish I could tell you what the magic formula is so that each one of you could break free from the burden of dystonia, I honestly don't know exactly what helped the most.  In my opinion, everything I did contributed to my recovery and I am sincerely thankful to all of those who helped me along the way.  I will share some details of my journey with the hope that it may help you find your own pathway to healing.

My symptoms began in July, 2015.  First it was an odd feeling in my left shoulder that I attributed to muscle tension, something I had dealt with most of my life.  Then it progressed to a difficulty turning my head to the right, and finally my head began to pull to the left.  Over time, work became difficult and awkward.  I was in pain most of the day as my muscles ached and were in constant spasm. I soon discovered I was able to control my movements by touching the left side of my face or neck with my hand.  This was great in some ways as my dystonia was much less noticeable and my neck did not hurt as much, but it became extremely painful and exhausting holding my arm up all day and I needed two hands to perform my job effectively.

By the end of the summer, my neck was continuously in a full spasm turned to the left, and I was pretty confident in my self-diagnosis.  I began to dislike having to go out in public.  I was in pain. I was exhausted. I was embarrassed.  And it was downright depressing thinking that I might I have to live the rest of my life this way.  Through my research and visits with two different neurologists, there was one and only one treatment option that kept coming up - Botox.  A year before, I may have given more consideration to Botox, especially since I was a pharmacist and drugs were my specialty, but by this point I was over a year into my holistic nutrition studies and was becoming more open to other forms of healing.

I was hopeful that I would stumble across a cure for this awful disorder that was ruining my life.

Over the course of the next several months, I tried acupuncture, chiropractic, hydrotherapy, massage, laser therapy, reflexology, body talk, osteopathy, sensory deprivation tanks, neurofeedback, NUCCA, energy healing, Inner Engineering, Chinese medicine, yoga, meditation, and nutrition.  I persisted with all my treatments throughout the winter and would sometimes have seemingly spontaneous momentary improvements that gave me the motivation to continue, but overall my symptoms were still progressing.  I became increasingly frustrated.  I then stumbled across Dr. Farias on the internet and I was intrigued by his movement therapy.  I began reading one of his books and experimenting with some exercises, and once again I regained hope as I would sometimes find momentary relief from my spasms.

Although my neck spasms continued, I began to notice that my lifelong stress was beginning to dissipate.  I had always been stressed about money, but now, although I was no longer able to work and I was spending several hundred dollars weekly trying to get better, money was no longer an issue for me.  The only thing that mattered to me was getting better.  I no longer had job stress and was actually quite relieved that I was unable to work as I had been wanting to quit my job for quite sometime and focus on my nutrition studies.  My digestive symptoms were improving as a result of reduced stress and all of the nutritional cleanses, supplements and dietary changes I had made.  And for the first time in my life I was actually learning how to relax, despite my constant muscle spasms.

About a month prior to attending Dr. Farias' workshop, I discovered a chiropractor in a nearby town who was studying to be a functional neurologist and has since graduated.  He did more extensive neurological testing than either of the neurologists I had seen in order to try and identify the areas of the brain that were causing my dystonia.  He gave me exercises to stimulate the areas of the brain that were performing inadequately, and once again I noticed some small improvements.  After seeing Dr. Farias I began seeing a colleague of his who continued to provide me with additional exercises for my eyes and my balance.

In May 2016 I attended Dr. Farias' workshop in Toronto.  It was so much more than I expected.  I learned way more from Dr. Farias that I had ever learned from my research or from my neurologists.  I began to clearly see the connection between stress and dystonia, and I learned that my dystonia had a strong visual component.   It was an intense, yet educational, workshop.  I went home feeling confident that I could be normal again one day.

That day came sooner than I expected.

I did my exercises from Dr. Farias faithfully everyday.  There were days that I didn't feel like it, days that I didn't know if it was working, and days when I almost gave up.  It was time consuming, and sometimes exhausting, but I persisted.  Slowly I began to see changes.

Within 3 months I no longer needed to touch my face with my hand to keep my head looking straight ahead.  On our summer vacation I was able to hike, swim, canoe, and bike, although I was definitely still very cautious about my movements.  I felt like I had gotten my life back and for that I am extremely grateful.  The next 2 months brought even more improvements in my ability to move normally.

As many of you already know, I give Dr. Farias a huge amount of credit for my recovery.  He is extremely knowledgeable about dystonia, and truly passionate about what he does.  However, I cannot ignore the contributions of all the other practitioners I saw before him that enabled my brain to be in a state where it was receptive to neuroplastic changes.  I believe dystonia is a complex disorder that often requires multiple different treatment modalities, including movement therapy, proper nutrition, proper mindset, and relaxation techniques for the body and the mind.

Thus, I am not advocating proper nutrition as a cure for dystonia.  But proper nutrition can help the  the body deal with the effects of stress, including hormonal imbalances, blood sugar imbalances, poor liver function, inflammation, and poor digestion.  Proper nutrition is also essential to supply the brain with the nutrients required for optimal brain function to deal with stress and to be receptive to neuroplastic changes.

I firmly believe that recovery from dystonia is possible, and it is my goal to develop a nutritional program for people with dystonia, and to provide them support, education, and motivation as they pursue their own pathway to healing.