Life with movement disorder
Those who know me personally, those who follow me on Instagram, and those who spent a couple minutes from their precious free time to read a post I wrote about plastic straws - should be aware, that I have a movement disorder called Essential Tremors. Those who do not know, well now they know. And those who do know, and also for those who do not know, here is a bit more information about my life with that disorder. --> btw, I somehow hate a word disorder. It sounds so serious, or like a contagious.
Anyway, Essential Tremors (often shortened as ET) is the most common movement disorders in the whole world. But still, unfortunately, it is also often misdiagnosed or just ignored for years before getting a diagnose. Especially if first symptoms come in childhood.
Also, ET is considered a neurodegenerative disease, but the process is usually slow and might take even decades before getting worse.
There has also been a lot discussion about the connection between ET and Parkinson's disease, and even connection with multiple sclerosis (MS), and it seems like ET can progress into Parkinson's, or MS, but it also might be, that the diagnose has been wrong from the start, and it has always been Parkinson's or MS.
That is why ET should be as last option, but often doctors do not do brain MRI for example, which could show early signs of other diseases. Again, especially if the symptoms start when being young, doctors usually take the attitude "you are so young, it cannot be anything else than ET. No need for further investigations." -- I mean, that is what literally happened to me.
Me, my mom, and basically everyone else as well thought, that it is just being nervous. As it only happened during stressful situations like school presentations etc.
Because hey, after all, I lived in that era where we used presentation papers/carton whatever to write there our presentations - and had to hold those papers in our hands when standing front of the classroom. Just imagine that shakiness there and being like "yeah, I can hold this shit up, and read when I shake." Even my legs shake, and I always asked from my friends "did you notice my legs? Did you see that I shake?"
I mean, we did not have any other choice than hold those paper in our hands.
Later on, I started to shake while eating, texting etc. It was mild, and I think the only person who noticed something was my mom. And she started to ask me "have you seen that your hands shake?" for example after family dinner.
Few years later, I started to change my hand while drinking from glass, started to avoid bringing anyone a cup of coffee to table (in the real mug), trying to drink glass of champagne in the fancy parties with two hands (it looks ridiculous, but it was my only choice), and basically started to avoid using my left hand where the tremors were worse.
All that time I was also doing my work practices in restaurants, being waitress, and yeah it was annoying, but I think I only once dropped the whole bunch of just washed cutlery on the floor.
But at the time I realized, that I am actually avoiding to do something. Or using more my right hand, I realized, that something is going on.
So even for me, it took years to realize.
Or just a master of ignoring. ;)
In total it took over 7 years from the point where first symptoms came, to the point I got diagnosed.
Imagine that, it took 7 freaking years to get diagnosed with a most common movement disorder.
This is the reason why it is always important to keep searching for answers to own health problems. It might take decades to find answers, but someday there will be a doctor who will find out what is wrong.
Even though I have not had any brain MRI, at least I have a diagnose now. I first went to see a general practice doctor, and then, later on, that same year (2017) I went to see a neurologist. Wanted to see a neurologist to confirm the diagnose, and ask some additional questions what I could not get from the GP.
For example, I have been asked if I am nervous (that is okay, not a bad question), but some people have taken it to whole next level and asking "are you on drugs?" or "are you having a bad hangover?"
No, I am not.
I do not use drugs and rarely use alcohol. And I have never been drunk (just saying).
I have tremors in my hands, the left hand is worse than the right one. I do not really know why, but it has been like that always.
Sometimes I have tremors in my legs, and sometimes it can be even heard in my voice.
Stressful situations make tremors worse, caffeine makes them worse (probably one reason I have never used to drink coffee). Even a hard workout makes tremors worse. Basically, any workout makes them worse, but it is something I am used to.
Though it is good to know, that I have not been super nervous during all of my hammer throw competitions in the past, but the reason my legs shake, is actually Essential Tremors.
It has been a bit hard, especially when there are cameras around etc.
And the tremors are even more disturbing during Taekwon-Do training because sometimes there is needed to hold one position for a little longer, so when I hold my hands in some position for a longer time, I get tremors. Fun.
But I have never let my tremors stop me doing anything, and I will not let it in the future either.
It is something I have had so long already, that in most cases I am used to it. Sometimes it surprises me, dropping something on the floor etc. But that is life.
I have never taken any medications for my tremors, I have a prescription for medications, but I have decided that I will not use them before I really need to. It is not a time for that yet. Especially as I know, that the side effects of those meds (beta blockers) might be even worse than the tremors itself (especially in the long run).
What I do use as helping me, is a weighted pen. The neurologist I visited told, that I should start using my left hand more, and make it work so that it gets used to movements. So sometimes I am writing with my weighted pen with my left hand, but it also makes my normal handwriting better even just writing with the right one.
Anyway, Essential Tremors (often shortened as ET) is the most common movement disorders in the whole world. But still, unfortunately, it is also often misdiagnosed or just ignored for years before getting a diagnose. Especially if first symptoms come in childhood.
Also, ET is considered a neurodegenerative disease, but the process is usually slow and might take even decades before getting worse.
There has also been a lot discussion about the connection between ET and Parkinson's disease, and even connection with multiple sclerosis (MS), and it seems like ET can progress into Parkinson's, or MS, but it also might be, that the diagnose has been wrong from the start, and it has always been Parkinson's or MS.
That is why ET should be as last option, but often doctors do not do brain MRI for example, which could show early signs of other diseases. Again, especially if the symptoms start when being young, doctors usually take the attitude "you are so young, it cannot be anything else than ET. No need for further investigations." -- I mean, that is what literally happened to me.
Early symptoms
I had early signs already when I was a teen. I think already in 2010. So when I was 14.Me, my mom, and basically everyone else as well thought, that it is just being nervous. As it only happened during stressful situations like school presentations etc.
Because hey, after all, I lived in that era where we used presentation papers/carton whatever to write there our presentations - and had to hold those papers in our hands when standing front of the classroom. Just imagine that shakiness there and being like "yeah, I can hold this shit up, and read when I shake." Even my legs shake, and I always asked from my friends "did you notice my legs? Did you see that I shake?"
I mean, we did not have any other choice than hold those paper in our hands.
Later on, I started to shake while eating, texting etc. It was mild, and I think the only person who noticed something was my mom. And she started to ask me "have you seen that your hands shake?" for example after family dinner.
Few years later, I started to change my hand while drinking from glass, started to avoid bringing anyone a cup of coffee to table (in the real mug), trying to drink glass of champagne in the fancy parties with two hands (it looks ridiculous, but it was my only choice), and basically started to avoid using my left hand where the tremors were worse.
All that time I was also doing my work practices in restaurants, being waitress, and yeah it was annoying, but I think I only once dropped the whole bunch of just washed cutlery on the floor.
But at the time I realized, that I am actually avoiding to do something. Or using more my right hand, I realized, that something is going on.
So even for me, it took years to realize.
Or just a master of ignoring. ;)
Getting the diagnose
But even after realizing how I avoided some certain things, it took a couple years before getting a diagnose.In total it took over 7 years from the point where first symptoms came, to the point I got diagnosed.
Imagine that, it took 7 freaking years to get diagnosed with a most common movement disorder.
This is the reason why it is always important to keep searching for answers to own health problems. It might take decades to find answers, but someday there will be a doctor who will find out what is wrong.
Even though I have not had any brain MRI, at least I have a diagnose now. I first went to see a general practice doctor, and then, later on, that same year (2017) I went to see a neurologist. Wanted to see a neurologist to confirm the diagnose, and ask some additional questions what I could not get from the GP.
 |
| Drawing spirals is one of the methods with what neurologists diagnose ET - so simple way. |
Life now
During social events, some people are brave enough to ask why my hands shake, and finally, I am able to give the answer. I really appreciate those who ask rather than assume. You will not hurt anyone with asking, or you should not hurt anyone, but you can hurt if you assume.For example, I have been asked if I am nervous (that is okay, not a bad question), but some people have taken it to whole next level and asking "are you on drugs?" or "are you having a bad hangover?"
No, I am not.
I do not use drugs and rarely use alcohol. And I have never been drunk (just saying).
I have tremors in my hands, the left hand is worse than the right one. I do not really know why, but it has been like that always.
Sometimes I have tremors in my legs, and sometimes it can be even heard in my voice.
Stressful situations make tremors worse, caffeine makes them worse (probably one reason I have never used to drink coffee). Even a hard workout makes tremors worse. Basically, any workout makes them worse, but it is something I am used to.
Though it is good to know, that I have not been super nervous during all of my hammer throw competitions in the past, but the reason my legs shake, is actually Essential Tremors.
It has been a bit hard, especially when there are cameras around etc.
And the tremors are even more disturbing during Taekwon-Do training because sometimes there is needed to hold one position for a little longer, so when I hold my hands in some position for a longer time, I get tremors. Fun.
 |
| After workout tremors make it hard to take selfies... That's why I always hold my phone with two hands. ;) |
But I have never let my tremors stop me doing anything, and I will not let it in the future either.
It is something I have had so long already, that in most cases I am used to it. Sometimes it surprises me, dropping something on the floor etc. But that is life.
I have never taken any medications for my tremors, I have a prescription for medications, but I have decided that I will not use them before I really need to. It is not a time for that yet. Especially as I know, that the side effects of those meds (beta blockers) might be even worse than the tremors itself (especially in the long run).
What I do use as helping me, is a weighted pen. The neurologist I visited told, that I should start using my left hand more, and make it work so that it gets used to movements. So sometimes I am writing with my weighted pen with my left hand, but it also makes my normal handwriting better even just writing with the right one.
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