Just a Thought

Dr. Hope didn’t see me for my appointment. One of his colleges did. I found out the day of my appointment, during the ride downtown to the doctor’s 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 more, but I didn’t want to wait any longer. I proceeded with the appointment and my boyfriend, who was with me agreed it was best not to reschedule.

The doctor’s assistant saw me first. She was young. She asked a lot of questions. She didn’t take down any notes. She didn’t even have a computer with her to type up my answers to her questions. Either she had an amazing memory or there was a recorder in the room I didn’t know about.

About 10-15 minutes into the visit my nerves must have gotten the best of me and triggered the spasms. The doctor’s assistant was happy to see this (in a clinical manner) and went to fetch the doctor. I will call this doctor, Dr. Matter-A-Fact. By the time she came around I was already having trouble speaking, but my episode still wasn’t as bad as it could get. The doctor proceed to check my reflexes which made the symptoms worse and then she flashed a flashlight in my eyes and I just hated her for doing that.

She sat down in the stool and proceeded to tell me as I struggled to breath and as the pain set in deep that she agreed with my previous doctor. She continued to tell me there was no cure for what I have, but  that my symptoms are more scary to experience or for my loved ones to see than they are harmful. She expressed I would not die from them. She then went on to express that she believes it is psychogenic and that  perhaps it could be an underlining issue or stress that is cause of it. She said no one really knows for sure. . She recommends making an appointment to see a psychiatrist and she tells me to look for one that does cognitive behavior therapy. She said a therapist is my best option and so on and so on…

By this time I tuned her out. She become an noise in the background as she answered my boyfriends questions and my shortness of breath grew louder and louder in my ear, tears rolling down my cheeks and my jaws locked so tightly shut I felt ache in the roots of my teeth. What was the point of listening after all. She pushed my problems on to someone else.  She saw me once and that was enough in the span of less than half an hour and that was enough for her to throw her expertise as a movememnt disroder specialist in my face.

With my jaw locked, I couldn’t defend myself. I couldn’t ask questions. I couldn’t beg her to see me at least 3 or 4 more visits before she made her quick diagnosis and pushed me on to someone else to help me solve my problems. My muscle locked and twisted as I sat crooked in my chair trying to force myself upright I could barely breath. My boyfriend continued asking questions, but all I wanted to do was get up and run out of her office, except I couldn’t.

She spent less then half an hour with me. She watched videos I previously submitted prior to my visit. She looked at my file…she’s an expert in this. Who am I to argue right?

She didn’t see or hear anything else. She didn’t take into account that when this began happening to me almost 4 years ago 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 this mattered.

I went home and I cried for days. I hardly said a word to my boyfriend. 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. For once in all these years that I have been fighting to find a cause or a cure, I lost hope. Who am I in comparison to experts?


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 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. Is it a chemical imbalance. Where in the brain is the rewiring occurring? I know a lot of people who have been through worse trauma then me. Why aren’t their brains 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 because movement disorder specialist, at least where I live are just pushing us onto therapist and washing their hands of it.

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.



It’s In The Manner

It’s the wording. It’s the way someone says something, the tone, the timing, the vocabulary used. It makes a difference when you are sitting across from someone with power telling you very matter a fact what is wrong with you without knowing who you are at all in the half an hour of time that they spend with you. There is something so dehumanizing about it, so humiliating and frustrating. How do you argue with an expert, a specialist? How do you look at yourself in the mirror and not feel like shit? Hopeless? Weak?

Dr Hope didn’t come to my rescue? I didn’t even get to see Dr. Hope. One of the other doctors at his practice accepted my new patient application and made an appointment for me. I found this out on the day of my appointment on the way to the doctor, but I wasn’t going to dare reschedule. Waiting another 3 months to see Dr. Hope was not a smart idea in my opinion. I could see this other doctor for now and then transfer over, maybe. But what if that doctor wasn’t as good as Dr. Hope? What if….

She sat there. She watched me as my body twisted and tightened and I struggled to breath. She was so calm. so collected. As if she has seen this a million times before and she very matter-of-fact tells me she agrees with the first specialist I saw. She goes on to tell me about his credentials for a second and then continues by telling me there is no cure but I wont die from this. It looks really scary to people when they see it, but I wont die from it she explains. She tells me to look into cognitive behavior therapy with a therapist, but other than that there is not much else that can be done. She goes on to say a few other things but my this time I’ve tuned her out.

In about 15 minutes she made a decision about me based off what she saw in the room, my patient folder and the videos I sent in to the other doctor over a year ago. What was I suppose to do? She’s the expert. Besides my jaw was locked and I was struggling to breath so I couldn’t even defend myself or ask questions.

I wish I had never gone. Aside from the doctors and the dystonia symptoms this has been the happiest time of my life, but they insist it must be an underlying issue. I hadn’t felt this defeated since the last specialist I saw…

Laying on the bed, defeated, hopeless…

Google: psychogenic dystonia also known as functional dystonia, somatoform disorder or conversion disorder. This dystonia is not neurological in nature. Often treated with psychologist  that does psychotherapy with either biofeedback  relaxation or CBT cognitive-behavioral therapy…



The Small Details

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.




Vanity Meet Zombie

Sitting here in my Ford escape, parked under the few small tree/bush shade available,

Dystonia Blues

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.

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


Babies, Bodies and Baclofen

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!

As Needed

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.