You can’t fix dystonia with a cast
This title is a relatively poor attempt at a creative way to illustrate how so many people confuse dystonia with temporary ailments like the flu, other short-term health issues, injuries, etc. Let’s use a broken ankle as an example. In most cases, if you sprain, fracture, or break your ankle, you are put in a cast for 6-8 weeks. Once the cast is taken off, most patients are back to normal within about two weeks after the ankle strengthens from atrophy. I know this firsthand because I broke both my ankles on four occasions throughout my life, not to mention a host of other injuries.
Of course, there are exceptions where people need additional treatments, therapy, and perhaps surgery when they have injuries. However, in most cases, you break your ankle, a cast is put on, and shortly after it is taken off you are back to normal. This is not even remotely close to what life is like with dystonia and other chronic health conditions, but far too many people incorrectly believe they are the same.
When my dystonia began in 2001, I tried many different treatments to see what would help most. After each treatment/therapy, the people in my life thought it would fix or eliminate my dystonia, just like a cast for a broken bone, aspirin for a headache, or a band aid for a cut. They expected my muscles to stop contracting, my pain to disappear, and my neck to be straight rather than the muscles involuntarily turning my head towards my right shoulder. Sure, there were times when I had temporary relief like this, but it never lasted. My oh my were people shocked! Some even blamed me for the treatment not working. Yes, I know… absurd. Some even left my life because they couldn’t grasp the concept of a health condition that didn’t heal. Sad but true.
Here is the 411 about dystonia that needs to be understood. There is no treatment for dystonia that results in permanent healing. Some will argue there is, and there are some who have been healed with some treatments, but it is a rare and unique situation. For most people, healing means a reduction in symptoms or just better symptom management, but these people are still living with symptoms; for some it can be life altering. Unlike a broken ankle that heals, unless there is remission, dystonia will be there in one way or another. You can’t put a cast on my neck or give me a massage and expect it to disappear. A massage feels great, as do other therapies I utilize, but it doesn’t fix anything long term. We all wish it were that simple.
What also needs to be understood is that dystonia manifests differently in all of us and a treatment that helps one may not help another. Further, the list of treatments is endless ranging from things like physical therapy to brain surgery, and many people are doing more than one thing to help manage their symptoms. Let me repeat that… MANAGE their symptoms. Treatments do not heal dystonia like an ankle immobilized in a cast heals a break.
There is no cookie cutter treatment so every case should be taken individually, something not done nearly enough by doctors who often use just one modality for every patient. Dystonia has to be managed daily with a variety of treatments and lifestyle changes, no different than people with diabetes, celiac disease, Parkinson’s disease, essential tremor, chronic migraines, fibromyalgia, arthritis, etc., have to monitor their health condition on a daily basis to be able to function, and even “functioning” is a relative term when it comes to dystonia.
Please understand that there is no black and white with dystonia. Most people live in that massive grey area in the middle trying to get through the day with whatever treatments and palliative care are at their disposal. Unlike a broken ankle, we can’t put a cast on our affected body part for 6-8 weeks, take it off, and move on with our lives. The two are not even in the same ballpark and we who live with dystonia would appreciate it if people understood that there is no cast or bandage or pill for dystonia. We respectfully request that people accept the fact that the treatments we receive are temporary in most cases and do not make dystonia disappear. One day we will have treatments like that, but for now, everything we do is for the purpose of minimizing our symptoms so we can function in our daily lives.
To learn more about self-care tools, please click here to check out my website, and if you would like to see the numerous treatment options for dystonia, along with many tools for managing the physical and emotional aspects of dystonia and coping with all of our daily challenges, please see my two books, Diagnosis Dystonia: Navigating the Journeyand Beyond Pain and Suffering: Adapting to Adversity and Life Challenges.
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Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and the author of 2 books: Diagnosis Dystonia: Navigating the Journey (2015) and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges (2021). He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Thank you Tom for ongoing valuable insights. When people say to me ‘are you well?’ my stock reply is ‘sometimes’. It often encourages people to open up about the ‘sometimes’. There is then a sharing and an understanding of how we live, day-by-day with our mostly hidden difficulties.
Being heard and acknowledged gives a great lift to our spirits.
Thank you Collette. I think that is a great response to open up the door for more communication that is thoughtful and caring.
Tom, quite frankly I don’t know where I would be without your insight and support. Sharing your journey allows me to feel hopeful in managing my own. Thank you!
I am so happy I can be here to help and please never hesitate to reach out if I can do anything!
Love! After 11 yrs and maintenance this is a brilliant piece of literature to share! Positive thoughts always!
Thank you very much, April!
I have Focal Dystonia so I understand what you are saying. I was wondering if you have investigated gene editing given the reporting around CRISPR? Some day they may be able to use it to heal dystonia – fingers crossed.
Thanks Sam. I am not very familiar with gene editing so I will look into it some more.