I have had cervical dystonia since 2001. It was very severe for many years, but over time I have been able to gain significant control over my symptoms using a variety of different approaches. I have since written 2 books on the subject (Diagnosis Dystonia: Navigating the Journey, and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges), as well as many articles, but I am still asked what I do that helps me.

I understand that not everyone likes to read books or articles, so I am going to share the “Reader’s Digest” version because I know how horrible it is to suffer with this disorder, and I want people to have hope and see that there are many options. For starters, I want to make it very clear that I am not cured. People think that because my neck is straighter than it used to be that I am free of dystonia and am cured or in remission. This is not true. I still have symptoms and have to work hard every single day to manage these symptoms. These include muscle spasms and contractions, dizziness and disequilibrium, back and shoulder pain, fatigue, sensitivity to various stimuli, difficulty sitting or standing for too long, restricted head and neck movements, as well as scoliosis in my back and herniations and stenosis in my neck.

I often describe my body feeling unstable like a half-played game of Jenga because all the different segments are working hard to balance the others out. However, and this is a big however, I would estimate that I have improved about 75% from my worst when it began back in 2001. The majority of that improvement is thanks to the ST Clinic program (discussed in a couple chapters), as well as other movement therapies I have come up with on my own over the years that suit my body. Their purpose is to replace faulty motor (movement) pathways in the brain that cause the symptoms of dystonia and replace them with new motor neural pathways to allow the body to move more freely and under control. Oral medications I take are nominally effective.

I also do posture work and eye movement exercises, get daily massages (by a person and/or a massage machine), and occasionally acupuncture. I do abdominal/core work and other light strengthening exercises, swim, bike, walk, and dance. I use topical pain lotions, trigger point tools, sensory tricks, ice, and heat. I take CBD oil once in a while, GABA supplements (and many other supplements), and have very good eating habits.

I also have a good balance of activity and rest during the day. I schedule my day so that I do the most difficult things when I feel my best, and I don’t push myself when I start to feel an increase in symptoms. “Pushing through” pain is not worth the need for more rest, ice, massage, and other interventions.

On the emotional side, which is equally important – healthy relationships, stress management, not being so hard on myself, saying “no” without guilt, confronting and overcoming anxiety and depression, breathing and mindfulness activities, meditation, prayer, singing/humming, writing, taking on projects to feel a sense of accomplishment, relationships that make me laugh but are also deeper than surface level, and most importantly, how I think about challenges and process life events.

My symptom management approach has become a lifestyle where there is a physical and emotional synergistic effect. People frequently ask, “What helps you most?” This is a very difficult question to answer because what helps me today versus 5, 10, 15, 20, or 25 years ago might be different. I have done so many things throughout those years based on my symptoms, so there is no cookie cutter answer to my symptom management approach. On a daily basis, I incorporate many of the things I mention in my books and this blog, but some of them I utilize more now than I did before, and some of them I utilized more years ago than I do now.

I am always listening to my body. I am always learning new things. I am always trying new things. So, there is no one answer that I can give that would satisfy the “what helps you most” question. I wish I could say I had DBS, or it was a medication and/or botulinum toxin injections, or something else more simple and straightforward, but this is not the case for me and probably most people. Very few people I know are fortunate enough to try one or two treatments and get significant symptom management, which is why I need to utilize all the things that I mentioned and make it into a lifestyle.

I’ve also been able to come to terms with the fact that I have dystonia and don’t really care anymore. I certainly wish I didn’t have it, but I do. If I don’t come to terms with it, it will own me, so the less I care the less control it has over me. I try to live my life by following what M. Scott Peck says in the beginning of his book, The Road Less Traveled: “Life is difficult.” This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. So, these are my puzzle pieces to achieve my current level of improvement and ongoing symptom management. I have no doubt they will change again as time goes on, and I will roll with these changes, which is something else I have had to learn to do without resistance.

Resistance to the fact that we have dystonia is not in our best interest by any stretch of the imagination, so do your best to come to terms with it in your time. Don’t force it. Let your unique situation work itself out and as it does, I hope you are able to find the puzzle pieces to help with your specific situation.