When Life Gets Blurry, Adjust Your Focus

This summer I had the opportunity to tag along with my niece to Walt Disney World and Universal Studios. My step counter was ever so happy with me! I've never seen 25,000 steps in one day since our trip! Slowly, each day, as we grew more and more tired, I noticed my eyes quit focusing well. This had happened before, on a milder scale, especially as I did my graduate work while working full time last year. I would have to read my assignments first thing on the weekend, because by the afternoon, I couldn't see well enough to read it easily. By day 3 in Florida, I couldn't even read the menu at a restaurant. I remember the day we went outlet shopping and she had to read EVERY single price for me. I thought, well, it happened, on June 23, my vision officially became old. I was 43 after all. I'd heard about this happening in your forties. I had "readers" that my eye doctor had prescribed the previous year to help get me through graduate school. They were of no use at this point, but I wore them the rest of the trip. Fast forward a week or so...I'm home and slept tons. I was caught up on my rest and BINGO, I could see just fine. Huh.

Once something starts, it seems to continue with me. The rest of my summer break did the same. If I got too tired, my eyes would blur. Once I rested, all was right in the world again. I was referred to an ophthalmologist, but of course, I was well rested when I went to see him and he saw nothing to explain the eye fatigue which always came with the pesky eye drooping. I'm adding this to my list to ask the movement disorder specialist neurologist. I'm oddly excited to get an opinion from someone who sees the quirky all day, every day.

So, now I have a tell tell sign of doing too much...blurry vision. I'm learning what is too much, but sometimes a girl just wants to have fun and extend herself a bit! Of course, if I plan correctly, and do lots of rest afterwards which usually involves a Netflix marathon, all is well again.

Life is full of twists and turns, it's your focus that matters. 

I'm a pirate! Aye! Blepharospasm

So, in the fall of 2015, I began to get this weird dropping eye twitch thing. It seems to occur with fatigue, too much reading (and I was in grad school, taking a full course load, on top of teaching all day), and bright lights. Once again, it was back to the neurologist. This time I went every 3 weeks for awhile, took lots of photographs and videos for the doctor to view. Wildly, once it "shuts" for all functional purposes, I can put an ice cube on it and it pops back open almost instantly! After many visits and updated scans and tests, the neuro felt like I had developed a second focal dystonia like the cervical dystonia in my neck, this one was in my left eye. It is called blepharospasm. Oh joy. Yeah me, I am that lucky! Now, I'm not totally convinced this is the right diagnosis, but until I get into see a movement disorder neurologist, this is the diagnosis I have for now. It is always hard when you do not fit the "mold" for typical symptoms in the neurology arena. (That specialized neuro takes from 6-8 months to get into in my area!) I found that I had to do my graduate school reading when I was fresh in the morning and to be mindful of how much sleep I got each night. This meant my weekends now consisted of reading first thing on Saturday until I had double vision and continuing on Sunday morning until I was finished. If I am out late the night before for such things as parent conferences, concerts, etc., I tend to have more issues the next day. So, I am even more mindful of my evening events during the school year. Now, for me, at this point, the eye thing is not painful at all. It is more annoying than the neck tremor as it causes me to have double vision, but it is not a spasm like the neck. Again, I take the same meds for the eye as I do the neck. Eventually, I will do Botox injections for both as that is the gold standard of treatment for dystonia. However, I've heard the injections are painful and costly and require they be repeated every 3 months. Plus, they usually "overfill" the injection at first which can lead to some other side effects such as inability to hold my head up, slurring my speech, and swallowing issues until enough wears off to give the perfect relief. But again, it is constantly wearing off so the "perfect" few days won't last long. For  now, I'm able to handle it as is and pretend I have an alter ego that is a pirate! Hey matey! Aye!

Here's is the official definition of blepharospasm from www.blepharospasm.org:

 Blepharospasm is a neurological condition characterized by forcible closure of the eyelids. Blepharospasm usually begins gradually with excessive blinking and/or eye irritation. In the early stages it may only occur with specific precipitating stressors, such as bright lights, fatigue, and emotional tension. As the condition progresses, the spasms may intensify so that when they occur, the patient is functionally blind; and the eyelids may remain forcefully closed for several hours at a time. 

geste antagoniste...what the what?

So, it seems like you should say "'bless you" after this term, right? It is just a fancy term.  Gest antagoniste means a 'sensory trick.' This is something I read about online. Thank goodness for Google. It means there a chance that when I have small tremor, I can touch the side of my face or my chin and the tremor will stop. It's magic. It works for me. So, if I feel the tremor building inside, I can sometimes touch my face and get it to stop. I can also use it once the tremor is noticeable like in my gym classes when I'm working out. It helps me resume my normal activities sooner.

I don't like to be the center of attention. I've always been a "behind the scenes" kinda girl. It fits my introvert personality. So, something as noticeable as a tremor sets off anxiety in me, which in turns, sets off a tremor. What a vicious cycle. Here is my inner dialogue that occurs: Will others notice?? Do I have to explain myself every time? Do they want an explanation? Is it as noticeable as I think it is? It isn't that I'm ashamed. I'm not. I don't like to be outside the norm. That's it. I see how society is with anything outside of the norm. I've been guilty of looking too long myself at others who don't fit the "box." My stares are usually out of concern or pity (that's a whole other post) or curiosity. Dystonia is still new to me. I'm sure, with time, as I get more comfortable with myself and as the dystonia progresses, I'll be moving and shaking to my own awkward inner beat. For now, I hide it when I can with this sweet sensory trick.

I don't understand the science behind geste antagoniste, but I am amazed each time it helps me stop the neck shaking quicker than without it. Small blessings that mean so much.

Shaking my head no-no no-no

In the late winter of 2014, I began having vocal issues after contracting an upper respiratory infection. This led to consistent voice fatigue, hoarseness, and swallowing issues. Since I was a teacher, this really affected my job performance. I was worn out each day, just trying to teach lessons.
This constant issue over several months led to so many tests (swallow study, 27 laryngoscopy tests, CT scans, etc.) and doctors. All in all, I saw 4 Ear, Nose, Throat doctors, 1 laryntologist, 3 neurologists, 2 speech pathologist/voice therapists, 1 pulmonologist, 1 rheumatologist, and probably more I don't remember. After a failed vocal surgery, my laryontologist told me to adjust to my new life. This was not acceptable to me. I went back to my ENT and he tried one more thing he had just learned about in a conference in Arizona. If this didn't work, he was going to send me to Vanderbilt as it is the premiere voice center in the U.S. and only about six hours away. The medicine he tried, gave me a strong voice again. However, it was something I couldn't be on long term, but there were substitutes that worked most of the time. The side effects of the substitutes were horrendous at first. I really wanted to give up on it, but knew my livelihood and ability to hold a job depended on my voice. That kept me trying to get past the first three months. I made it and all the symptoms disappeared except for insomnia.
Since the medicine worked, but only gave me voice power for short periods of time, I moved from a regular classroom teacher to a position where I only had 6 students at a time and was able to rest my voice every 30 minutes. I also had use of the microphone system in my room to help my voice project better on the really bad days which came without warning. My principal was great about this challenging time for me. She saw me first as a person, then as an employee. This was the first neurological glitch I encountered. Well, actually, that's not true. I lost all the hearing in my right ear, during my senior year in high school, due to a virus that attacked my neurological auditory system. My ENT said maybe I should avoid viruses to which we both laughed heartily. Being a school teacher, viruses were rampant and constant and unavoidable.

A year later, during spring break of 2015, I noticed my neck was twitchy, but only when I looked down and to the corner of my shoulder. Every time I would bend my  neck this way, it would start to tremor on its own, uncontrollable to me, like I was saying "no-no, no-no, no-no."  It was weird and a bit scary at first. I remember going outside to show Craig who was doing yard work. He said maybe I slept on it wrong. I kept an eye on it. At my next ENT appointment, I mentioned it. You know the look that a doctor and nurse share but don't say?? Well, I saw it. He asked me to see a neurologist soon and set up an appointment for that week. This led to many speculations from scary things like ALS to doable,but life altering things life MS and Myasenthia Gravis.  One neurologist referred me to a more specialized neuromuscular neurologist who did a muscle zapping test called an EMG. Literally, they poke you to make your muscles react and then zap you with electrical currents to test your muscle reactions. This occurred from my big toe all the way up to my cheeks and forehead. This was my least favorite test. Then, a couple of brain scans and a neck MRI later, and I had a diagnosis of Cervical Dystonia.

Here's what the Dystonia Medical Research Foundation says it is:

Cervical dystonia, also known as spasmodic torticollis, is a chronic neurological focal dystonia characterized by neck muscles contracting involuntarily, causing abnormal movements and awkward posture of the head and neck. The movements may be sustained ('tonic'), jerky ('clonic'), or a combination. Spasms in the muscles or pinched nerves in the neck can result in considerable pain and discomfort. Unfortunately, there is not yet a cure for cervical dystonia. 

Of course, I googled everything I could. This is both comforting and frightening. I didn't tell anyone other than Craig and my brother for awhile due to Google. When you search for cervical dystonia, the most awful pictures come up. That was not me. That was not going to become me, I hoped. I was not ready to face those pictures, get pity looks or worse yet, get the stares in public. You know, the ones we've all been guilty of, the stares of knowing something is wrong with the person, but you keep watching anyways. The other issue is it is so rare, it doesn't have the publicity or the online presence like Multiple Sclerosis or Parkinson's. In fact, most of the reliable, patient friendly sites I've found are outside of the U.S. The online support groups are hard to find or mixed in with other diseases like I mentioned previously.  

I began every 3 month visits to the neurologist to check my progression of the disease. Luckily, I have not increased in symptoms very much and am considered to have a very mild case with a slow progression for now.

So, if you see me with my head slanted or shaking in a no-no pattern or even a yes-yes pattern, I am not answering a question, I am having a technical difficulty. Give me a moment...or two. It will pass. PS: Please do not stare. You're welcome to ask if I'm okay though.

The funky chicken walk

I'm learning every day what sets off a tremor or a spasm. And ironically, that changes. Usually, once I have established a certain move or issue that sets it off, it always sets it off. The change happens as the dystonia changes or progresses, I can add things to my  list. 

I  know small things set it off like certain postures (as found out when it first started occurring). Another weird thing is long meetings. This is either as a bored participant or as the host. Towards the end of a long day of meetings, I will feel the tremor start to build and want to burst out. I think it must have something to do with the table height vs my left arm. And yes, I can often feel it building on the inside before it manifests outwardly. This gives me time to compensate if it is only minor. I host a meeting once a month that is all day long and I know by the last one, my head is drooping sideways and if I look up too much, it will start shaking. I avoid those tasks. I don't want it to interfere with the purpose of the meeting. Unfortunately, it can look like I'm avoiding eye contact. It is always a compromise. Other happenings were anything my body perceived as stress. I started a regular exercise program to strengthen what I had and my body was in shock. It let me know. Now, as I have pressed through and continued on, I now only set the tremors off about once a month during a workout unless it has too much shoulder and neck exercises. 

The first time Craig saw the tremor in full blown mode was when I was surfing social media and saw from a Tulsa news station that one of my dearest friends had died. At first, I thought it was a joke. Why would she be on the news? I kept searching Facebook, went to her page, and saw the condolences pouring in. She had a heart attack at the young age of 38 and since she was a principal in the Tulsa area and it was a unexpected young death, it was news worthy. I started sobbing. I loved her lots and we talked often. In fact, we had been talking more since her school year was over and mine was winding down. I went to find Craig, who was outside. This is when I found out that when it is in full blown mode, I can't walk very coordinated. It is like the signals get crossed and I walk like a funky chicken. It is very jerky. As I'm trying to make it to the shop, Craig sees me, heads immediately my way, I can't talk as I'm sobbing and he looks at my phone that I'm holding up. He tries to console me, tries to hold me, but I'm jerking so bad, it's impossible to be effective. That was an eye opener for the both of us. 

Stress (perceived or real): strong emotions of any kind (joy, anger, sad), long drives with holding my neck straight, turning my head too far to my left, reaching behind me or over my head for any reason with my left hand (jumping jacks, reaching in a cabinet, reaching for a pillow), sleeping on my left shoulder, putting my weight on my left side (like in side planks, alternating hand/leg raises, v-ups)...are known issues for now. I use some medications, and a neck brace/pillow to give me some relief. This won't always work, but for now, I'm grateful it helps.