Putting Our Lives On Hold

I am grateful that on most days I am for the most part functional. I am grateful that my dystonia has not affected my job or my life in such a profound way as it has affected some of my fellow dystonians. I can count on 4 hands the times I’ve struggled to breathe because of it, on one hand the times I’ve struggled to open my mouth and speak because of it, and on 2 fingers the times I’ve been put in a wheel chair because of it. Yeah, I know it all sounds scary having to go through any of that even once. Trust me it has all been very scary for me to have to go through, but I can still take care of my kids, work, cook meals,   practice my martial arts, go to school and so on. Yes, dystonia has slowed me down a bit, during bad dystonic storms a lot, but I still manage to get up and going the next day.

Sure, I have to take longer breaks, be more careful about my workouts (no more than an hour of intense workout)), rest more on the weekends, get a good amount of sleep and I have to continue to eat better. I have to be diligent about it. That is not always easy either.

Despite my efforts the dystonia never goes away. Though I may not always have spasms that debilitate me I can almost always feel a “weird numbness or weakness to my left limbs”. The superiority of my right side over my left, especially when I lift weights or furniture or run or do yoga and so on, is incredible too. My left side is, what feels like my weak side. I know my left side is there and its mine, but I have to work extra hard to train my brain to control it, though I am not exactly sure what is causing it to malfunction.

Ugh, I went on a tangent again. My point is, in my opinion, my level of dystonia is mediocre in comparison to those who have had their lives completely altered by dystonia. They cannot work, they can barely walk. Some of them can barely eat or speak. Just go to YouTube and type in dystonia. There are hundreds of video of babies, kids, young adults and older adults giving all of us glimpses of what it is like to have dystonia. There are more than a handful of Facebook groups, meetup groups, twitter groups and a lot of other organizations all over the world talking about their symptoms and how little help there is to treating it. So, my question is WTF is there such little awareness about this disorder?

According to American Association of Neurological Surgeons, “As many as 250,000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. It is a condition that knows no age, ethnic, or racial boundaries – it can affect young children to older adults of all races and ethnicities”.  This isn’t a new disorder either. There are people who have been living with dystonia for over 3 decades. It angers me that today, with all the technology we have I can go to a movement disorder specialist and all he wants to do is push another pill on me and tell me I need to keep seeing my therapist. People in worse condition than me are also told to take a pill and see a therapist. Who do we need to see to prove that this is real? We are not making this up. Who would want to live like this? Not me.

I read dystonia is progressive…

I want to become an Occupational Therapist, (I start the OTA program the week after next) and not worry I will have to quit months after I become one. I want to earn my black belt in martial arts. I want to walk not wheel down the aisle with my future husband. I want to dance with my children at their wedding. I want to hold their babies without fear of dropping my precious grand-babies. I want to wake up tomorrow without worrying that by the end of the day, if it’s a bad day I may not breathe for a few seconds over and over again until I panic that the next time it happens I wont be able to breathe at all because my muscles wont unlock no matter how hard my boyfriend tries to relax my muscles or if the hospital will even know what to do with me, because many doctors still don’t know what this is. Are we suppose to put our lives on hold until they figure it out, until they find a cure? I don’t think so.

This lack of awareness is going to change. In the following days I will be posting Question and Answer interviews of some of my fellow dystonians generous and brave enough to post a little bit more about what it is like to have and live with dystonia.

By the way did you know September is Dystonia Awareness Month?

If you get the chance take a look at James Sutliff, a fitness model with dystonia, who is kind enough and brave enough to post videos of his battles with dystonia and his progress with speech therapy.

My first post: The Spirit Is Strong In This One



2 thoughts on “Putting Our Lives On Hold

  1. You framed the lack of awareness issue quite well. As a GD patient who has progressed much farther than you, I can assure you that the DMRF and fellow patients are working very hard at increasing awareness. I am aware of at least several very significant efforts underway right now. I happen to be part of three of them. In addition to awareness, we need to find a way to urge regular neurologists to obtain the additional training required to become Movement Disorder Specialists. A MDS is much better prepared to diagnose and treat patients presenting with dystonia.


  2. Well said! I have adult onset DRD (dopa responsive dystonia) and it took 17 years from first symptoms to be diagnosed. Lack of awareness is crazy. We just have to keep trying x


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