*I posted summarized version of this in one of the online dystonia support groups a few days ago*
About two years ago or so I earned my purple belt in martial arts. About that time or so my symptoms went from numbness and weakness into spasms and muscle locking. The first time I realized something was really wrong was during another private lessons to learn the crescent knife form with crescent knives. My friend/classmate who was also supposed to be there to learn the form did not show. I was extremely exhausted after a long day of work that Friday evening. My body ached, but I blamed it on being on my feet all day and my instructor asked me to let go of the knife in my left hand into my right hand. I couldn’t! I couldn’t open my hand. Then he asked me to step forward and I couldn’t step forward either with my left leg. I just wanted to sit down…man, I was really tired. Struggling to step forward my legs buckled and I fell knees first to the floor. My instructor who also happens to be my long-term boyfriend , was concerned it was my blood pressure spiking up again or that I was low on electrolytes or something. I think that evening I had also sparred during sparring class, but I don’t recall clearly. It must have been though because he left me there on the floor with our instructor while he went to go buy sugar and Gatorade and then he came back and forced me eat it all. I can be quite stubborn. I felt hydrated, but did not feel better. In fact I struggled to walk. We all giggled and called it my robot walk because of how slow I was walking, but it was a bit scary. The next day I felt better, but I didn’t forget to tell the doctor at my next doctor’s visit.
This year my symptoms have quickly progressed into tremors and difficulty breathing too. One evening earlier this year I found myself on the floor at the dojo during practice barely able to breath. We were doing partner work and forms that were fast paced, but something a fitness instructor like me should be able to aerobically handle, easily. Instead I stepped back to the back wall huffing and puffing. When everyone lined up after break I couldn’t move from the back wall and I could see concern on people’s faces. I must have looked like I felt like shit. People offered to help me to the bench, but I knew right there and then it would take several people and it would take time. I didn’t want to disturb class anymore than I already had. I remained there for the rest of class. When class was over my kids came over and I struggled to signal to my boyfriend/instructor that I need his help. He could see I was having spasms but he could not see I was struggling to breathe. No one could. My daughter interrupted his conversation with someone else and he looked at me and knew it wasn’t just regular spasms. I struggled to tell him, as speaking is difficult when you can’t get enough air that I needed him to push my muscles away from my diaphragm again like he’s done before, but before we expected it even that wasn’t working and my entire left side, including the muscles on my ribs and back began to spasm almost like a seizure. Our instructor hinted at taking me to the hospital, , but again I’m stubborn, I did not want to. I was sure it would pass. About 20 minutes later it did. My kids who also practice martial arts saw for the first time what I’d been hiding from them for months. They knew about the spasms, but luckily the breathing issue usually happened late at night or luckily coincidently during weekends when they were with their father. If they happened during the day I could hide in the bathroom for a few minutes until it was over, but that night their scared faces made me realize I had to explain everything. I pulled up a bunch of information on the computer about dystonia, pictures, facts, etc and updated them on what doctors have told me and even allowed them QandA. No, I am not going to die I assured them. It isn’t a disease. My neuroligist thinks it something called dystonia, a neuromuscular disorder, in short my brain is not communication properly with my muscles. He is sending me to a movememnt disorder specialist for a correct diagnosis. Surprisingly we all felt a lot better when I came clean and they understood it better and I no longer had to hide my symptoms.
Last month at my last doctors visit at my regular PCP the blood pressure machine triggered my symptoms and I could hardly breathe or move. This was the first time my PCP saw me struggle to breath. Even though I was months away from seeing a specialist (thanks to these waiting lists of thousands of patients trying to see the 2 or 3 available doctors), my PCP insisted that I at least try some medicine to help in the meantime. She knew of my reservation for medication, my worry of side effects and so on. She finally said you need to be able to breath. My boyfriend said the same thing to me when I struggled to breath in the shower a few weeks prior. I cried for days about it, had to swallow a lot of pride, had to put many fears aside and eventually when I realized I feared the rain because it triggered my symptoms I knew I was wrong and they were right. I bit the bullet and took the meds. It’s been a few weeks and the difference is amazing. I still have symptoms, especially tremors and I still struggle to breathe from time to time but it’s not nearly as bad as it was or how bad it would have become. This past weekend I earned my brown belt. Something I at one point lost hope in earning because of how bad it was all becoming. I know this dystonia journey is not over, and I know the meds may not work permanently, but for a moment even if just a small moment I can breath better and I can still kick ass and that feels awesome.
****Update after I posted this, about half an hour later I had an unusual episode with all the tremors and spasms and breathing struggles, but in addition twitching in my face and weird jarring of my neck and head. It really freaked my boyfriend out. He thinks the overexertion from the rank test may be the cause. He may be right because I am exhausted and achy once again, but I don’t regret getting that brown belt. I just need to rest extra is all I guess.