Dr. Hope didn’t see me. One of his colleges did. I found out the day of my appointment on the ride downtown to the office. I guess they didn’t understand that I only wanted to see Dr. Hope. It didn’t matter. If i rescheduled I would have to wait another month or so. I didn’t want to wait any longer. I proceeded with the appointment. My boyfriend was with me.
Her assistant saw me first. She was young. She asked a lot of questions. She didn’t take any notes down. She didn’t even have a computer with her. Either she had an amazing memory or there was a recorder in the room.
About 10-15 minutes into the visit my nerves must have gotten the best of me and the spasms began. She was happy (in a clinical manner) to see this and went to fetch the doctor. I will call this doctor, Dr. Matter-A-Fact. I had trouble speaking but still it wasn’t bad. The doctor proceed to check my reflexes and that made the symptoms worse and then she flashed a flashlight in my eyes and I just hated her.
She sat down in the stool and proceeded to tell me as I struggled to breath and the pain set in deep that she agreed with my previous doctor. She continued to tell me there was no cure. that my symptoms are scary but i will not die from them. That perhaps it could be an underlining issue or stress that is cause, nut no one really knows for sure, but it is definitely psychogenic. She goes on to explain that cognitive behavior therapy and a therapist is my best option and so on and so on.
As she spoke I couldn’t defend myself. I couldn’t ask questions. My muscle locking and twisting and I could barely breath. My boyfriend tried to ask some questions, but i tuned him out as I did her after some time. I didn’t want to hear it anymore. I wanted to get out of there.
She spent less then half an hour with me. She watched videos I previously submitted. She looked at my file…she’s an expert in this. Who am I to argue right?
It didn’t matter that when all this began happening to me it was the happiest time in my life. I was out of a bad marriage. I was in the middle of going to school to pursue my dream job to make a better life for my children and myself. I had a lovely man in my life. I was the healthiest and strongest I’ve been in many years. None of that matters to these doctors.
I went home and I cried for a few days. I hardly said a word to Jacob. He wanted to talk about it. I didn’t. I just wanted it to all go away. I wanted to pretend i didn’t see that doctor, that she didn’t sit there calmly diagnosing my future. I lost hope.
Shockingly I also barely had a spasm during this very depressing and stressful state of mind.
About a week passed of wallowing in self pity and then I grew tired of myself. i began to research again and I came across two website neurosymptoms.org and FND hope. It was the best information that I could have come across in a long time. Psychogenic dystonia is often also termed functional dystonia and something else I can’t recall. There is controversy of which to use because it is not yet clear why “this non-organic” dystonia happens, but it is possible to have the symptoms without stress and it is also possible to have it because of past trauma. There is a movement happening to correct the terminology to functional dystonia in the DSM-5 diagnosis book so that patients receive more than just psychological treatment and doctors don’t just push us off onto a therapist when they don’t know what to do with us.
With that said i understand now that i do have functional dystonia (I refuse to call it psychogenic) but I do not agree with the idea that it is current stress. is it possible that my past trauma could have rewired my brain? Yes! That I can accept. But I still want to know why my brain rewired. I know a lot of people who have been through worse trauma then me. Why aren’t their brain rewired and their bodies locking and twisting?
It basically comes down to this. There isn’t enough money for the research to be done to discover why this is happening. Until there is enough money research wont be done and all of us with functional dystonia are stuck with two options, experimental drugs and a therapist.
I know if I don’t at least try the route the doctors are asking me to take, they wont give me a second look. So, I am in therapy. I also went back to my neurologist. The one doctor that actually paid attention to me and gave the time of day. He wants me to try medication to see if it will help change my brain chemistry. So, currently I am looking for a psychiatrist.
I wish I had something profound to say. I wish I could hook you with my first line and then reel you in for the rest, but truth be told I am tired. I am too tired to blog, too tired to think. Since I began school I have forced myself to make time to open books read and study. To make time to post on here is even harder.
This past weekend I missed out on a fun bow and arrow target practice weekend with my kids and the sweet man in my life, so that I could stay home and study for another test, another practical. I aced it by the way (95 Sweet!!!), but that was just one of many I will have to sacrifice weekends for. That was just one of many that will make me grumpy, tired, scatter brained and envious of others free time. Before my biggest fear was how dystonia would keep me from graduating and practicing, but lately I wonder why I have chosen to add additional stress to my life. Wait!!!! Didn’t a super experienced doctor with a lifetimes worth of experience tell me that my dystonia was stress related???? Wait what? If I was ever more stressed it would be now. It would be now when my grades determine my future as OTA/OT. More than two C’s and I can get kicked out of the program. This is no joke. I have had panic attacks over it. My grades determine if I stay in or I get booted out. If I get booted out there goes all this hard work I have already put in to a better future, for my kids, for me, for us. Don’t let the sweet faces of my instructors fool you. Then of course, there is always that underlying stress of if my grades are fine dystonia will decide to suddenly show her nastiest face and render me useless. Everything I have read about dystonia and it usually says it will get worse according to experts who have no idea what it is or why it happens.
I’ve told myself (you know those pep talks) to take it one day at a time. If I can work as an OTA for at least a year and I make a real difference in someone’s life while doing it than that is more than I thought I would be capable of doing when all this started two years ago. I had no clue at all of what was going on with my body. I’m not dieing (pep talk), sometimes it feels like I am, but I am not. I also like to remind myself that maybe because of my dystonia I will be more compassionate and understanding in my line of work especially with anyone with neurological disorders. This last part is not pep talk. I honestly believe in that respect dystonia has helped me be more compassionate and understanding and even more knowledgeable of the human body, especially mine.
Today was a great boost for my ego too. Not only did I do a great job with our interview-to-make-a-personalized-craft-gift-tote bag assignment, but I also realized what a beautiful thing it was to do, how something so small can really help lift up someone’s spirits and make them feel valuable. The bag made for me by my classmate was so touching I almost teared up but I held it in. The bag I made for the classmate I interviewed helped bring out my stick-man creativity and hoped that with it I could help uplift her if even for a little bit from her woes. I am so thankful my instructor had us do this assignment. It is REALLY nice to have fun assignments between the medical terminology quizzes and the practical and chapter exams. I can’t wait to continue my growth project (I am learning how to make mosaics) and then move on to the clay project.
I like that not everything in my life is about dystonia anymore. For awhile my life revolved around dystonia. I obsessed about it or went into complete denial about. Sometimes I cried for days about it, other days I was just happy to get be able to walk or breath normally. Not being able to breath really puts a lot of the petty things into perspective.
Since I stopped teaching my weekly fitness classes and not doing as much martial arts my dystonia has improved. I haven’t taken a pill in about week. My boyfriend has noticed that too. Does that mean I can’t exercise? I hope not because then my muscles will atrophy. It is sad to watch the muscle I worked so hard to build turn into just skinny.
Is it gone? No! It has improved, but it hasn’t gone away. Its still there. I have had period like this before when the dystonia is barely noticeable that I can barely feel it, not even the numbness, tingling and weakness and then it comes back with a vengeance. Even today during the practical, I lost my balance standing on my left leg (demonstrating mm strength for pelvic tilt). Everyone else thought it was because I just lost my balance but I know deep down that weird feeling I felt standing on my left leg like that was all thanks to dystonia. Luckily no spasm followed.
The last time I had spasm and trouble walking was at the dojo last week, before that I had been to several practices with no problem, but last week was different. I was doing great. I kept up with everyone and did what I had to do. Then half way through practice my leg froze and my foot rooted. I could not take another step. All of the black belts and most of my classmates understood what was happening. When I couldn’t pick up my leg or foot off the ground and we all had our little giggle, my instructor helped me walk backwards (left foot in foot drop and painfully dragging) to get to the wall and rest. My left arm locked up too. The rest of the class went on and I watched in some envy and hope that if I concentrate long maybe I can visualize into physical practice eventually. If only I wasn’t so much of a hands on learner. My boyfriend can see a move once and pick it up like he was born to know it and me… I use to have a little bit of that. Now its hard for me to connect my mind with my body. I use to be so determined, so strong, so… Now it is so hard to keep myself from quitting. The stares, the embarrassment, the frustration, my ego…
But today was a good day and that tiny loss of balance was no big deal. At least my leg didn’t glue itself to the floor. Tomorrow I will go to work and then take another stab at the dojo. Then on Wednesday I will go to school and I will keep going until I can’t go anymore.
Sitting here in my Ford escape, parked under the few small tree/bush shade available,
about 15 minutes before work I’m thinking about dystonia. I’m thinking about the pictures I just saw on Facebook of a little girl with twisted legs. Her mom in the dystonia support group is wondering if loved ones ever get over seeing a loved one like that. Do they? Do you ever get over seeing your loved ones spasming, twisting, twitching, struggling to breath, often in pain or sometimes struggling to eat? Do you ever get over looking at the pain on our faces? Do you ever stop feeling helpless, angry, confused, exhausted taking care of us? Do you know how often we feel like a burden to you (this is our constant worry)? Do you ever notice how embarrassed we are because we worry how we look (hideous) and sound (stupid) to you? Why do you stay?
Since dystonia, especially during dystonic storms I worry about how I look a lot. I’ve never had an amazing self esteem, but it really sucks now. I know its vain, but it is a true emotional worry of mine. When my children see me or my boyfriend sees me with my limbs twisted and my hands contorted, my eye twitching and I struggle to breath I feel them looking at me and I want to hide. I want to move to another room and be alone during my spasm, except I can’t always get up and walk and so there they are looking and trying to help, feeling helpless and I am begging my children to look away because I don’t want them to see me this way. I want them to see me normal. I want them to keep that vibrant healthy strong image of me. I am suppose to care for them, to help them That is the natural order of things.
I am begging my boyfriend to let me be because I don’t want him to see my zombie walk, my twisted arm, my hunched back, my locked jaw. When we first started dating I remember feeling his stare as he watched me walk. He would come to me and place his hands on my hips. He made a comment once or twice back then about the way I moved. I remember moving a little slower so he could watch a little more carefully. I can still walk sexy most days, but other days it’
s a good day if I don’t fall over a twisted drop foot.
So my boyfriend and I have been on shaky grounds recently, not because the relationship is about to go south. No, instead it is moving forward and we both want it, but it is so unclear as what is too come for the both of us. Dystonia has changed everything.
When he and I first started this relationship I was sure I wanted to end up with him and have his babies, even though I already have babies of my own. Then high blood pressure took hold of my body and didn’t let go no matter how healthy I already lived or how healthy I continued to live there after. For a short period I thought WTF!? Why even make an effort if I have it no matter what I do, and then my little sister who seems to be taller and wiser than me said, “If you weren’t living healthy that high blood pressure could have killed you already”. I saw her perspective of it. I had to agree.
Still, my boyfriend knew if I wasn’t taking my BP medicine that could be dangerous for me and that look in his eyes of wanting to have his own babies with me changed. Then dystonia invade my body and that look in his eyes completely disappeared. He wouldn’t even talk about it or he would just brush me off and say it was too dangerous. And that was that. He didn’t even hear me out. He didn’t even give us a chance to talk to a doctor, but I guess since doctors don’t know jack about dystonia how in the world would they answer our questions about pregnancy and parenting during dystonia.
So, I began to do some research: pregnant with dystonia, pregnant dystonians, having babies with dystonia, is it possible to have a safe pregnancy with dystonia and so on. There is so little information about dystonia its incredible. The information on the internet on dystonia just explains the basics about dystonia, but there is no elaboration, there is no unique case by doctors and their ideas on it. What ever is on the internet about dystonia is created by dystonians themselves, videos, news, articles, blogs, vlogs about dystonia are all created or encouraged by my fellow dystonians and our effort to create dystonia awareness. Thanks to a blog I gained more insight on the affects of dystonia during sex which was a very hard topic to talk about to me at first. Then I got over it.
Thanks to a blog I also had the opportunity to read day by day what a poor woman went through during her pregnancy, the pain, the loss of hope, the hope renewed, the surgery, etc. I showed my boyfriend. I told him about it. I told him it wont be easy, but I told him it might be possible. He still kept pretending he just didn’t want to have kids, but I knew deep down he didn’t want any because he was afraid me or the baby would be hurt and he didn’t want to loose either one of us. He said what if you spasm during pregnancy or stop breathing. I knew then I caught him in his sweet lie and he could no longer deny he wanted a baby.
Earlier this week he said the words out loud, “I want to have a baby with you. I was scared. I am still scared”. He began to list what if scenarios. I began to list some possibilities. We talked a bit. Talked about the timing. We would have to wait at least two years because I was about to begin the OTA program in two weeks. We talked about my age. I am almost 8 years older than him and not to off from 40. We talked about possibly needing to take me off my meds for at least 6 months prior to trying to start making a baby. We both stayed quite for a bit. We knew the dangers that would pose. We need to talk to the doctors I reminded him, but at the same time that came out of my mouth we both knew doctors don’t know what they need to know about dystonia how will they know about pregnancy and dystonia.
Here I am, not to far from 40, about to start a second career, 3 of my own children, a young boyfriend, a body that is falling a part and I just want to cry because I feel like because of me he is missing out on an opportunity to have his own babies. I’ve told him before I would let him go, that I understood if he needed to leave, but he keeps telling me he isn’t going anywhere. He is here to stay and I can’t help want to have a baby with him. FU dystonia! FU!!!!!! We will expose you. We will defeat you!
At my last doctors visit with my PCP, she was delighted the medicine is helping my symptoms. I admitted to her that I forget to take it sometimes. Surprisingly she told me it was a good thing I was not taking the medicine everyday. She explained that she didn’t want me taking the medicine everyday, but instead just to take it as needed. I explained to her taking the medicine as needed is difficult to do, because baclofen makes me drowsy and I need to be able to function throughout my day and so I can only take it at night at bedtime, but most of the time my symptoms do not happen at bedtime.
Still I was excited of the idea of not being tied down to the drug, so I decided to experiment with the idea of only taking as needed. For 5 days I was able to go without the medicine, except for the numbness everything seemed fine at first. Then it was time to really test how well my body could handle it without the medicine. So far not bad. Not only was I 5 days off the medicine, but I had taken a month off from much of any exercise at all (yes I still had a few episodes during the month, but not much) including martial arts. The day I returned to class my symptoms returned mildly with tremors and mild spasms, and terrible foot drop, but I managed to make it to the end of class. It was hardly much cardio at all that evening, but I was still breathing like I had just run a few miles. Still I figured it was a manageable tolerable evening. At home I went to sleep earlier than usual and I made sure to take my medicine right before bedtime.
A few days later during interrupted intimacy with my boyfriend and a bunch of laughter from the interruption, I began to feel really tired suddenly and not too long after I began to spasm. The spasms kept coming and me eventually kept from breathing in or out for seconds at time until he pushed on my diaphragm or a movement allowed me to gasp for air. This went on for several minutes into the night. He was afraid to let me fall asleep, afraid I would stop breathing. I knew I would not stop breathing completely, but the terrible feeling of not being able to breath was to say the least traumatizing. I asked for my pill right away. He already had baclofen in hand.
I have been afraid to not take the pill since then. Another thing I have noticed is that whether I take the medicine or not the numbness and weakness on my left side still exists. For example, yesterday while trying to carry furniture into the house as I am picking up furniture I feel like I am really giving it my all to help and my right side is, but my left side isn’t. Also on some days more than others I am sensitive to being touched on that side. I don’t necessarily go into spasm when I am touched, but I really don’t like the feeling of being touched on my left side. It is difficult to explain that to my kids when they try to hug me. I don’t want them to be afraid to touch me.
The good news is that today, after months of waiting to see one, I was finally able to see a movement disorder specialist. As expected the moment I opened the door to my boyfriend’s dodge truck to hop out and step down on to the parking lot and then took a step forward, my left leg began to twist in and buckle. I’ve noticed that more often than not my spasms can be triggered by major visits to VIP doctors. The closer we got to the office the more I twisted and spasmed. I also noticed I began to walk slower.
On the bright side, my randomly visible symptoms would be fully visible to the doctor today. For me this was proof to him that this wasn’t in my head, that I am not making this up. In fact for the first time in over a year I was put in a wheelchair again. The doctor’s assistant called for a wheelchair for me to use as we transferred rooms because he was terrified I would fall again as we walked to it. Just moments before, as I tried walking to the next room (the one we were in was too hot for the assistance’s comfort) my left leg turned inward and I fell to my knee. Ouch!
So, in a wheel chair I went, to make him and my boyfriend feel better. Me, I had to swallow a lot of pride again. I would have preferred just walking backwards, but I could see the worry on their faces and in their demeanor. Before I was wheeled into the new room he wheeled me to the video room. He wanted to take advantage of the fact that my symptoms are visible and record them for the doctor. I signed a consent form to allow doctors to use my video for case studies and documentation. The assistant asked me to raise my arms, move my legs, try to walk etc. As always my left side decided to be rebellious and embarrass me, twisting, locking and the wiggles…oh they only got worse. I was then wheeled off again to the new cooler room.
In the new cooler room that he was not used to being in, the assistant fumbled with the mouse cord and explained how rarely he was in those rooms and that the others were occupied. He continued on and asked more questions about my symptoms, my history and so on. He noticed my tremors, asked about the spasms and then finally got up to do some hands on physical test. He used that tool doctors use to check for reflexes, a silver tiny hammer, and taped both my right and left limbs in different areas, also checking for my ability to feel temperature. My right side handled it all like a champ, my left side went into spasm after spasm. It was torture. Toward the end I even felt a charlie horse on the bottom of my left foot and in my ribs….All of it sucked royally. Did I mention the wiggles/tremors had me in constant movement? It really takes a toll on the body to move uncontrollably for so long. I was so exhausted after all of it and the the tears… I tried holding back the tears several times. I wasn’t always successful, especially not in front of the video camera, but I tried.
Finally, he told me to rest and wait and try to relax if at all possible. He said the doctor would be in a few minutes. In a few minutes the doctor was in. The doctor, from this very prestigious medical place I have heard raves about, walks in and introduces himself, sits down at the computer and listens to his assistant reread all the notes he had just taken from my answers to his questions. He reads the notes out loud in front of us, but for the doctor as the doctor writes scribble notes on the margins of some printed sheets he had in front of him. I couldn’t make out the words of the writing and I gave up when the wiggles started back up. The doctor did a few double takes in my direction. When his assistant finished reading the doctor turned to me and asked me if there is anything else that was left out or that I need to add. I couldn’t think of anything. The doctor asked me to extend my arms. My left arm was back in a spasm so I needed to use my right arm to lift it. He asked me to walk across the room. When I couldn’t walk forward, I asked if it was ok to walk backward. I did that earlier for the video too. They were both surprised by it and asked me how I discovered I could do that. I told them about the research I have done and the story about the female marathon runner I came across. She learned she could run backwards to keep going. I figured I could try walking backwards. It worked for me. I told them I researched what I could to learn as much as possible so I could be as functional as possible. They agreed with the idea. A few more questions and test were done. Of course the usual questions about medical history were done.
The bad news came not when he confirmed that he believes I had dystonia, but when he told me the type of dystonia he thought I had, psychogenic dystonia. It hit me like a punch to the face. I really struggled with the idea. Silently I agreed when he said it is much better than having any form of brain damage or something worse, but what wait WTF?!!!
As respectfully as I could I disagreed with him. I told him I do yoga, martial arts, I eat healthy, I exercise, etc. Yes, I have stress, but who doesn’t. He rebutted that all my symptoms point to psychogenic dystonia. He pointed out that some people have underlining stressors or depression they aren’t aware of. He sat up proud and let me know he has been doing this for 40 years and he knows what it looks like and he could refer me to other doctors or I could get second opinion, but in his experience his patients who have accepted the diagnosis get better faster and those who don’t accept it don’t get better. He continued explaining in a very blunt and honest fashion that it would be wise for me to accept the diagnosis so that I could get better. He then said he was going to prescribe an antidepressant for me. I could choose to take it or not. I tried staying calm and tried to respectfully argue that I wasn’t trying to ignore his 40 years of medical experience and yes I am stressed, but again who doesn’t have stress in their life. Unlike most people that do though, I actually follow the right steps to deal with it. I repeated my list of healthy living again (not extreme healthy living) and continued with, if I have any depression it is because of the dystonia getting in my way, not the other way around. I even mentioned that I was talking to a counselor since my divorce to help me cope…And before I could finish my statement he just cued into the word divorce and used it as ammunition to confirm my stressor….He didn’t wait to hear how long ago my divorce happened or how I am happier now than I was when I was married or about all the good things that are happening in my life right now, including my sweet boyfriend. So, I pushed through with questions like, what else is someone suppose to do to get rid of stress? Again who doesn’t have stress and why do episodes of dystonia happen when I am at my happiest like during great sex, spending fun time with my family, or during martial arts class (my best de-stressor). He said “good questions”, but he had no answers. He could refer me to a specialist that deals with my form of dystonia and to psychologist, if I need he repeated. He stuck to his belief of what I had, wished us a good day and suddenly I felt myself fuming. I wanted to say, “F! U! you stupid narcissistic doctor! I am not a freaken number. I’m real you ass! This stuff that’s happening to me it’s real! I have no control over this. I don’t even know when it is going to happen”.
A few minutes later his assistant came back in and asked me if I had any questions. I stayed as calm as I could if for no other reason, but because my stupid Obamacare government insurance for which I am lucky to have, but unlucky enough to have to pay $300 a month only covers this medical doctor. I am stuck with him! I cannot piss him off. Right now he is like a God to me. A God that I strongly believe has misdiagnosed my dystonia and there is not a damn thing I can do about it right now. If I don’t take the antidepressant he will blame my continuing symptoms on my lack of following his advice when I see him in 4 months. That’s right I have to wait another 4 months before I can see him again. If I take the medication and he is wrong than I am on another set of meds that are filled with chemicals not natural to my body and not needed by my body. So much for not doing drugs in high school. Now, I will be a walking freaken pharmacy. Did I mention, in some of the research I did certain medications, like antidepressants are the cause for dystonic symptoms. I feel like I am damned if I do and damned if I don’t. That’s a stressor in it of it self and I didn’t need it. Thanks doc!
But what if by some chance he is right? Does that mean I’m crazy and I have been doing this to myself. That’s freaken crazy! I’ve been on depression medicine before. Almost 10 years ago when my husband (ex now) was doing months of training to be deployed to Iraq not too long after. Who wouldn’t be depressed. Geeze give me a break. I was morning his absence and possible loss, not to mention I had two kids to take care of on my own. That’s more of situational depression. It isn’t permanent if taken care of. Yes, our marriage had already been on a rocky road for years, but again situational. So yes, I was depressed and I sought help and I was not ashamed and I took medication to help because exercise and eating healthy was not enough to keep me happy and sane. I was told it was a chemical imbalance in my brain and the meds would help balance it out. The medicine did help, but today…I am not depressed not in anything except maybe the trouble that dystonia is causing in my life. There is no shame in admitting depression. If I felt I had it I would admit it and take care of it, but I am not depressed. I am pissed! And if this has to do with stress, well shit… aside from doing what I am already doing, what else am I suppose to do.
Say the doctor is right and I have depression and anxiety and/or stress why do I have dystonia too? What in my body is saying, “oh! you can’t cope like other people so let’s make life more miserable for you and cause you to twist and wiggle in pain so much so that sometimes you will end up in a wheel chair. Oh oh oh and just to make it all the more confusing lets just do it on your left side”. Ahhhhhhh! Damn doctors and their 5 minutes visits with us!
I am home now. I am going to curl up into a ball under a blanket on the sofa, in the dark closes the blinds of the living room, binge eat fruit (i have no junk food in the house), binge watch mystery, crime investigation, and land invasion sci-fi, feel sorry for myself, make myself feel better with Kevin Hart comedy clips on Youtube, cry a bit, confirm my clients for tomorrow, maybe do a few chores, maybe look up scholarships for school and then do more research on what I have and video tape all of my dystonic episodes from now on. Then I am going to bombard the doctors inbox with videos. Yep that’s my plan.
Some of us are stubborn, even when our own bodies become our obstacles and there is no end to this obstacle…we are stubborn.
My stubbornness has almost become an obsession with research on everything and everything dystonia. My searches include: famous people with dystonia, athletes with dystonia, martial arts and dystonia, the benefits of yoga on dystonia, dystonia and new break throughs, dystonia awareness campaigns and so on.
There are dystonia support groups, petitions for more funding and awareness about dystonia, exercises good for dystonia, new non-medicated ways of helping patients with dystonia, YouTube video after video of people showing clips of what it’s like to live with dystonia. Some of these videos are heartbreaking, others are somehow refreshing to me to know that others have many of the similar symptoms that I do, not because I want them to feel the struggle, but because it proves this is not in my head.
This rare condition is actually quite common, but it seems the only ones who know about it are those of us who have to live with it and our loved ones who help us cope with it the best they can.
Yesterday, I came across an article of a 46 year old runner who wasn’t going to let dystonia keep her from her love for running, so she learned to run backwards. She runs backwards to keep doing what she loves. That’s awesome! I love to run. Dystonia hasn’t affected my run yet other than that I haven’t been able to in a long time because of the constant pain and throbbing in my left hip, but on my good days maybe I can go for a jog and see how it goes. If I struggle, maybe I can run backwards. I already know that walking backwards helps when my limbs lock. I learned this in my martial arts class, during forms. Maybe I can do forms backwards. That would be interesting to see.
I read about new therapy too, physical therapy doctors are using to help rewire/retrain the brain to help reduce dystonia symptoms. It is amazing how much information is out there. Why don’t people know more about this when it is such a common rare disorder.
I think every five minutes I get to learn more about it I take it in and relish in the new knowledge. How can this help me? How can I help others with it? A big part of it is the hope that if others can figure out ways to get around dystonia or in some sense work with it to keep doing what they love to do, why in the world can’t I.
I have hope just when I was being to lose hope that I would never get my black belt after years of hard work and practice and so very close to it. Just when I was growing frightened that dystonia could make my life impossible at work, at home, in public, in the rain, on vacation, that my kids would watch me struggle and fear for my safety I am no longer frightened. I know it is going to be a tough road, but I can do this. Its exciting just to think about how creative I’m going to have to be with this. Maybe I’m my own first OT patient.
I know this for sure. Dystonia has taught me to appreciate my body a whole lot more for what it is and be grateful for what it can do on any given day. It has taught me to be more compassionate and respectful of others for living with movement disorders.
The more I know about dystonia the easier it is to deal with it, the more I’d love to help someone else with it and let them know “Hey, its okay. Don’t lose hope. You just have to figure it out and learn to work with it”. And then I will show them the articles and videos and community groups of dystonians working together to live happy functional lives despite dystonia, perhaps because of it.
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob