The different things that help my dystonia the most – In a nutshell
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 (valium, baclofen). 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.
Tom Seaman has lived with dystonia since 2001 and devotes his life to worldwide education and awareness for this life changing disorder. He is the author of 2 books: Diagnosis Dystonia: Navigating the Journey, and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges, as well as hundreds of articles on dystonia, pain, and emotional health topics. Tom is a Certified Professional Life Coach in the area of health and wellness, working directly with people to help them manage their physical, emotional, social, and vocational challenges. He is also a motivational speaker and chronic pain and dystonia awareness advocate. Tom is also a volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books, or schedule a free coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Hi Tom,
As you said this is very difficult conditions. Everyone is trying to coop with it as they can. I have cervical and oromondobilar dystonia for 10 years a nd it’s getting worst. Tried everything but lately pain is immense. I’m thinking to have DBS. Wondering what’s your opinion on it.
Best regards
Hi Nadir- I am very sorry your symptoms are getting worse. I think DBS is a good option for many people. It has a high success rate for most people I know, so I think is something to seriously consider if you can’t find anything else that proves beneficial.
Thank you, I needed to hear and be reminded or these truths today. I am a “push through your pain” type of person, even when I try NOT to do that, so it makes my life difficult for sure. I’ve read both of your books and probably need to dust them off again!
I also push through the pain sometimes and it seems to always kick back harder. We want to stay on the go, but the body too often sometimes says now 🙁 So I think we need to enjoy the heck out of ourselves when we feel we are up to it 🙂
Thank you for writing about Dystonia, it is an awful disorder, but I have accepted that I have it and always will. My neurologist is awesome and listens to me, and he is honest and he has told me that I am the second worst case he has seen. I started with Cervical Dystonia and it quickly spread into Generalized Dystonia and I even have the neuro storms. Yet we don’t know why I have it and my neurologist has done all the tests trying to figure it out when I started going to him. I am really looking forward to reading your books and like you said it is hard to explain to others who don’t have it or aren’t around you all the time as every moment can be different. Thank you so much for spreading the word about Dystonia as I have run into doctors that don’t even know what it is! Let’s all keep spreading the word! And live the lives that we have been given the best we can!
Thanks for your comments. I am really happy to hear you have a good neurologist. That is so important, we so many people don’t know what this is like you mentioned. I was also told by some docs that I was one of the worst they had seen, but I have made some improvements and hope you can as well! I don’t know why I have dystonia either. It’s hard to pinpoint, especially when it changes like it has for you. I hope you can get some answers and relief from your symptoms. Keep up that great attitude and I hope my books are of help! Please reach out anytime if I can even be of help.
Thank you Tom. You continue to inspire me. It certainly is a very specific journey. Like you, I’ve come to terms with it – mostly, ha ha. I’m really lucky as I get random amounts of remission, usually followed by a warning to rest! Best wishes always. Collette.
That means a lot to me. Thank you! I wish you all the best always!
Thankyou 🙏so much Tom for your words of wisdom.Being in this club is not what we signed up for,but we have to make the best of a bad situation.
Thank you Michelle. It is not the club I would choose to join, but thankfully we have some really helpful people to guide each other along the way. I don’t know what I would do without so much support!
Hi Tom, I appreciate your writing on this terrible disease and can very much relate to everything you have talked about. Thank you for your time!!
Hi Elizabeth- Thanks very much for what you said. It is a terrible condition but I am pleased this resonated with you, hopefully in a good way.
Thank you Tom
I’ve been following your journey for a few years now, and I always take something from it that reminds me of my own struggles
Bless you
And thank you
Keep up the amazing work
And I will try and do the same
🙌❤️
Thank you Sue. What you said means a lot to me! Let’s keep rolling on together taking it one moment of each day at a time 🙂