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What Moves You? Dystonia Moves Me!

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In 2014, I was diagnosed with a neurological disorder called dystonia. Some people may have heard of it but are still not thoroughly familiar with the condition and its subtypes; I hadn’t. I did not know this condition even existed until a movement specialist diagnosed me with it.

When did it all begin? It was a lovely afternoon in early 2010, and I had decided to go to the grocery store. As I was walking in, my left calf hardened, caught me by surprise, and I fell to the ground. I don’t remember it being painful, but it was stiff for a few minutes, and it went away as quickly as it came on. I dismissed the experience, thinking I might simply be low in potassium, so I even grabbed a banana that day; banana cures everything, ha!

A few months later, it happened again. Once again, I dismissed it. However, the weird phenomena kept happening, again and again, sometimes with pain, sometimes without. On my next visit, I had finally decided to mention it to my primary physician, and he referred me to a neurologist. For a while, it was a series of tests and processes of elimination. It was a scary time for my family and me, that’s for sure. After months of having all the weird symptoms, one of the neurologists said I could possibly have MSmultiple sclerosis. Despite having most of the MS symptoms for months, we had to confirm it with another test, a spinal tap which revealed otherwise, so I was back to square one with my search for an answer.

My leg continued to spasm intermittently for a year. Though it was bearable, it was an annoying feeling. During my visits to various doctors, I had finally heard the word dystonia; however, my symptoms were mild and did not meet the criteria for a complete diagnosis. I had to also differentiate some of the symptoms from another condition I struggle with — hemiplegic migraines. I was frustrated for sure.

One day, my symptoms progressed. In addition to the constant muscle contraction on my left calf, I started to feel it on my diaphragm and throat, making it hard to breathe or speak at times. The involuntary movement followed along with my ankles twisting in; this time, it was painful. I began to get scared, and my husband pushed for more answers. We saw another movement disorder specialist, and I was diagnosed with PNKD; later changed to generalized dystonia as the condition showed more symptoms that fell into that subtype. It was a bittersweet experience because now, I have a diagnosis. However, the question remained, how am I going to live with this?

For the most part, my symptoms do not go away but are mild and manageable with preventive and abortive medicine. However, there are days, even weeks where symptoms seem to linger and can become very severe, which my neurologist called dystonic storm. For the most part, I learned to live with it figuring out if there were any triggers, and made sure I was aware of what could exacerbate the condition.

Because many do not understand what dystonia is or what dystonia symptoms are, many are quick to judge or offer solutions. I often hear people say, “but you don’t look sick” or “One day you’re fine and the next you’re not? Are you sure it’s not all in your head?” Some would say, “If I were you, I would eat this or that.” “How about taking supplements?” or “All you need is exercise.” I try to understand every comment and bits of advice as much as possible because I know they aren’t familiar with the condition. I try to keep in mind that they have my best interest at heart, well, most of them.

So what exactly is dystonia? According to Dystonia Medical Research Foundation,

“Dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. The movements and postures may be painful. Dystonic movements are typically patterned and repetitive. Dystonia can affect any region of the body, including the eyelids, face, jaw, neck, vocal cords, torso, limbs, hands, and feet. Depending on the region of the body affected, dystonia may look quite different from person to person. In addition to causing abnormal movements, depression and anxiety are common non-motor symptoms of dystonia.”

I believe sharing knowledge, education, and awareness is vital for people with dystonia or other chronic illnesses. Judgment and unsolicited pieces of advice are always going to be there, especially for those who are not familiar with the condition; this is the reason why I’ve decided to be open about my journey. I believe if we can, we should spread awareness so that people will understand of how challenging it is for us, not only physically but also mentally and emotionally. People need to understand that we want to be healthy like everyone else, but this is the life we were given, the road we need to travel; therefore, we must go through it with strength and tenacity. People, especially our friends and loved ones, must realize that what we need is understanding, not judgment or pity. Awareness is the key!  

Originally published: March 23, 2021
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