About four years ago, I found out I have a neurological condition called Task Specific Focal Dystonia (TSFD) - well, Task Specific Focal Dystonia of the Hand to be exact.
The condition is very rare, and the signs and symptoms are invisible to outsiders, until I am faced with a physical challenge of that most people take for granted nearly every day.
Writing is the specific task that is affected by my particular focal dystonia; this form of TSFD is more commonly known as "writer's cramp," and passed off because it is not a seriously limiting disorder.
No, Task Specific Focal Dystonia is not as serious as the debilitating disabilities in the world, but it can be a limiting disorder in certain situations, and because it is somewhat of an invisible disability, I encounter discrimination at regular intervals.
How I found out I have Task Specific Focal Dystonia or Focal Dystonia Signs and Symptoms
I had no major issues with TSFD symptoms while I was growing up. I went through elementary school, middle school, and high school (such as it was, I dropped out in the 10th grade) without being affected.
First Sign of an Issue
When I was around 19 years old, I got pregnant. So, I decided to take the GED in order to at least get out of high school by the time my child was born. It had been years since I had written for such an extensive amount of time (GED Exam - back then it was pencil and paper), and this was the very first time I noticed that my hands would cramp when I tried to write. The problem was not severe at first, so I brushed it off and kept it moving.
Avoiding the Issue
For the next 15 years of my life, I went about my daily activities without having to write on an extensive level.
I found jobs (mostly call center technical support jobs) that did not require much writing, if any at all, and I discovered a passion for technology and computers - this is how I got around my issues with handwriting, I learned to rely on technology.
When my youngest child began high school, I decided I wanted to seriously pursue a college degree. This is when I first guessed that I might possibly have a more serious issue than I first realized.
Signs of a Deteriorating or Progressive Disorder
On the first day of class in Freshman Composition (good old English 101), my instructor asked the class to write a paragraph or two in order to introduce ourselves to her.
I picked up the pen and paper, I began to write, and found that no matter how hard I tried...I could not write more than a few sentences. My hands literally curled up, and shooting pain crawled up my arm. I just looked at my hands with a feeling of complete disbelief, because I was so shocked that my own body could betray me in such a manner.
I was so bewildered that I wanted to cry, but that would have been rather odd, so I just sat there and pretended to to do the assignment. When the class was over I never turned in my paper.
Instead I made up some story about my handwriting being indecipherable, and I told my instructor that I would type it up and turn it in before the end of the day. Luckily, she accepted and thus began my two year history of typing to avoid the issue.
Self Diagnosis (not good) and More Avoidance
I have a sister who has Rhuematoid Arthritis (RA), and when she was first diagnosed, I did a lot of research about the disease. Through my research, I learned that RA is an autoimmune disease, and they tend to run in families.
So... I diagnosed myself (how silly, right?) as probably having some mild form of arthritis that affected my hand. I started using my laptop in all my classes (none of my teachers objected, luckily), I suffered horribly through anything that absolutely required me to write, and again, I brushed it off and kept it moving.
Avoidance Catching Up With Me
By the time I got into my sophomore year in college, my issue avoidance tactics were starting to catch up with me.
Several of my teachers started objecting to my using a laptop in class (yes, believe it or not, old-school, technology resistant professors still exist), and my math avoidance situation was coming to a head (math was the only class I could not take without completely avoiding writing, so I avoided it altogether - ).
When I met with an adviser, I was informed that I could not take another class until I completed the series of math classes I needed to graduate. I signed up for the classes and dreaded the first day, which was coming up in a few weeks.
One day before class began, I made a regular visit to my doctor's office. At my appointment, my doctor asked me routine questions about my overall health. I answered her questions, and I mentioned, very briefly, the issue with my hand pain and its relation to writing.
I really didn't think she would respond to it at all, but she stated that she was going to send me to a neurologist to have the issue examined. She didn't fully explain it, and I didn't question her judgment, but I thought it was a little odd at the time. I snapped up the referral to the neurologist and I went about my merry way.
Avoidance Near Miss
I am the poster child for self sabotage, and in this endeavor, I almost brushed off the appointment, because I thought it was pointless. I showed up because curiosity got the better of me, and because I had nothing better to do that day.
The neurologist asked me to describe my condition. I don't think I was more than five words into my description of the issue, when he interrupted me and gave me a People Magazine, a pen and a piece of paper.
He opened the book, picked out an article, and told me to write until I could not write any longer. I wrote the first sentence with mild to moderate pain, the second sentence came with severe pain, and the words became more indecipherable as I wrote. The third sentence was completely illegible, and the pain was intolerable, so I stopped.
He showed me other paragraphs attempted by people with Task Specific Dystonia (TSFD) across the country, and the pattern was 100% identical.
He told me that TSFD is a neurological condition that is more commonly known as "writer's cramp" (I was surprised by this, because I always thought "writer's cramp" affected people who overused their hands by writing too much...that goes to show you how smart I am...)
Eventually, he diagnosed me and gave me the prognosis and options for treatment, my problem was revealed, but a resolution was not on the horizon...
My neurologist told me that there is no established cure for Task Specific Focal Dystonia. However, there is a treatment to make things more tolerable, and exploratory surgery which MIGHT POSSIBLY correct the issue.
The treatment is a series of botulinum toxin (Botox) injections. The injections are administered directly into the upper and lower arm muscles and the treatment is both painful and expensive.
The exploratory surgery involves having a team of neurologists dig into my brain...to this one, I said "thanks, but no thanks." - I loving call this option the "lobotomy" cure.
I tried the botox injections. As expected, it hurt like heck. My first set of injections produced no results. The second set of injections made my arms and hands so weak until I could not grip anything heavier than my wallet. I abandoned the injections and decided to make do with the provisions below:
I was informed by my doctors that I could take my diagnosis to my schools disability services office, and I would be granted permission to take my laptop to class, and allowed to have a computerized component to my math classes (Yay Math! NOT!).
So, What is Task Specific Focal Dystonia?
So let's break it down. According to the National Institute of Neurological Disorders and Stroke (NINDS), dystonias are movement disorders in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.
Medical professionals classify the dystonias according to the parts of the body they affect:
- Generalized dystonia affects most or all of the body.
- Focal dystonia is localized to a specific part of the body.
- Multifocal dystonia involves two or more unrelated body parts.
- Segmental dystonia affects two or more adjacent parts of the body.
- Hemidystonia involves the arm and leg on the same side of the bo
As you can see from the descriptions above, "task specific" simply (and rather obviously) means that a particular dystonia only affects one particular task - In my case, it is handwriting.
Other people are not nearly as lucky as am I. Millions of people are affected with dystonias that affect more central and important parts of the body such as the neck or torso. Many others are affected with dystonias that affect their entire body. This is one reason why I just suck it up and keep it moving (...but for the grace of God, and all that jazz...).
I literally cannot write. People do not believe me when I tell them that I cannot write, because no one has ever heard of Task Specific Focal Dystonia.
People have heard of Writer's Cramp, but they - as did I, believe that it is a condition that stems from overuse of one's hand - I now know that nothing is farther from the truth, but no one else knows that.
A few years back, I thought I wanted to go to law school. I signed up to take the LSAT, and I asked for special accommodations for the written essay portion of the exam.
I had a horrible time getting the people at the Law School Admissions Council (LSAC - the people who administer the LSAT) to understand my disability and grant my accommodation request.
These people are lawyers, they are familiar with the Americans with Disabilities Act (ADA), and yet they nearly refused to budge, even with letters from my neurologist. Eventually, they caved in, but it was like pulling wisdom teeth with bare hands.
When I am at the bank, a new doctor's office, faced with filling out an apartment application, employment application, asked to write a statement, or any other situation that requires me to write (believe me, there are tons of these situations), people look at me sideways when I tell them that I have a handwriting disability.
They have that look in their eyes that says "Handwriting disability? Yeah, right. You probably just never learned how to spell, you big dummy!" Sometimes, they'll even say "handwriting disability, Okay????"
What I do now is simply keep my mouth shut. I avoid going into banks by banking online, I will not migrate to a new physician's office unless they have an online patient paperwork option, and I will not fill out any application unless I can do so online.
I have since dropped out of school (in my sophomore year, yes...I know) due to other issues, but when I decide to return, I will utilize the accommodations and as always, keep it moving.
Dealing with Invisible Disability: But You Look Well
- National Spasmodic Torticollis Association - NSTA
The mission of the National Spasmodic Torticollis Association is to support the needs and well being of affected individuals and families, to promote awareness and education, to advance research for more treatments and ultimately a cure.
- WE MOVE - Worldwide Education and Awareness for Movement Disorders
The Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.
- Dystonia Medical Research Foundation
Foundation supporting research, awareness and support related to dystonia.
Rachelle Williams (author) from Tempe, AZ on August 14, 2020:
Hi Kevin. First of all, you're welcome! I have heard of tardive dyskinesia and my heart goes out to you for the difficulties you face. People are just mean, I used to think it was ignorance, but now I"m not so sure anymore. I think its best to surround yourself with people who love and care about you and intelligent people who want to learn - pity the others, because there is definitely something "wrong" with anyone who tries to belittle someone for being different. Thank you for your comments and I wish you well!
Kevin Maddalena on August 12, 2020:
I wanted to thank you for opening up about your movement disorder and some of the challenges you face. I personally suffer from a different movement disorder that I believe is related to dystonia. I suffer from a pretty bad case of tardive dyskinesia. I don't have the ability to control all of the movements made in by my arm, face, and tongue. All day and night long my arm flails back and forth, while my face and tongue are out of control moving around like im a crazy person. The worst part about it is that almost no one has ever heard of my condition so people always just treat me as if i'm mentally insane or an out of control tweaker. No matter where I go strangers are constantly making fun of me and calling me names. Some stores stop me when I try to enter and ban me just because my movements aren't that of a normal persons... idk just wanted to thank you for putting something out that informs more people about movement disorders... maybe if enough people knew about these kinds conditions then maybe id start getting treated like I was a human being like everyone else
Rachelle Williams (author) from Tempe, AZ on July 22, 2017:
I empathize with your situation. I use technology to help me whenever I can, and my "signature" is one that can be scrawled out without any effort, and it never changes. If you have some sort of dystonia, it tends to become worse over time, so you you have to find a way to deal with it - by any means necessary. Take care, my friend...
Maria on July 22, 2017:
Reading this was as if I was reading something I'd written myself! I too suffer with Dystonia, Writer's Cramp and have done so for about 15 years-self diagnosed too!! After seeing Doctors and being sent for physiotherapy, nothing working, I started searching the Web, for similar stories and I came across the condition called Dystonia, most of what I read was exactly what I was experiencing-I'm fortunate though, I don't have the pain up my arm. I just cannot write!! When I try, I concentrate so hard at holding that writing implement, I grip it so tight that it eventually slips out of my hand!! When I realized I was having difficulty writing, how stupid, who can't write?? The answer was "me" ......not illiterate as I used to tell people, I just can't hold a pen, pencil, fat marker or any writing implement! The mere thought of having to write is SCARY!! I too shy away from writing anything opting to do whatever on my laptop and literally cutting and pasting if need be. The thought of needing to fill out a card for a birthday or similar is mind boggling, I'm a widow, so I have to attempt it on my own. When out and needing to write, I've given up on telling people of my condition, when I need their help I merely ask for help saying I've hurt my hand or my finger!!
I live in Zimbabwe where medical is not at ones fingertips as it is in a first world country, so attempting to seek medical is pointless. This condition really messes with my confidence.
However, one must press on.
inggo on September 02, 2012:
Your hub made me worry. But thanks I know now what I should do.
Deela on August 24, 2012:
I am a certified court reporter and have focal dystonia, writer's cramp. I have had it for 15 years, but just this past year I was diagnosed with it. I stopped hiding it. I tell people up front that I cannot fill out forms if they need me to. That I have dystonia. Some ask what it is. Usually I tell them it's a neurological disability, similar to Parkinson's, with out tremors. I look normal. That is until I attempt to write, hold a pen, and even holding eating utensils. Still not sure why I have it. I know of some other court reporters that have it, too. Would like them to do more research on the Focal Dystonia, Writer's Cramp. God bless to all of you. Keep your chin up and shine from the inside, out.
firstname.lastname@example.org on August 23, 2012:
I am a bookkeeper with focal dystonia. Every day is a battle...I do most things on the computer, but some things have to be done manually. People don't realize how much it hurts, through the whole arm, when you do try to write and the cramping starts. I am one of the fortunate ones-my medicine, Artane, does help some. It doesn't help most people. I have an excellent neurologist, who is now in the process of "getting me enrolled" in a Movement Disorder Clinic. I really hope it helps-I cannot afford the Botox injections and have many more years to work.
Good luck to you !!!
pam on March 22, 2012:
wow. You wrote exactly how I feel.
Missy on October 20, 2011:
I would love to discuss this further with you. I've been dealing with this since the age of 11 (now 30 years later) and although my neuro INSISTS this is not progressive maybe increasing stress or age has amplified it. I don't discuss the issue at work (don't want to come across as whiney) but increasingly I am having a harder time with handwriting and even typing. It is amazing to me to find someone with the same level of dystonia as I know it can be completely debilitating. I am actually browsing online looking for writing aids to help "hide" this but realizing I have no reason to "hide" anything.
shea duane from new jersey on September 03, 2011:
I have to say, you sound like you are doing really well now. Good for you!
Reynold Jay from Saginaw, Michigan on September 03, 2011:
This is a sad tale of your dealing with the TSFD. I have had a tremor all my life and remember my 6th grade teacher telling me I could not write well and I gave it little concern until years later when I always had problems with legible writing. It is a defective gene that causes it and is not as serious as what you describe as TSFD. I would imagine that you should always admit your disabilty up front ( I know you do now) and work around it in the classes. Excellent article here and let's hope it serves to help others with this disability. If you get in the mood to read 10 minutes of fiction about predijuce against the disabled, try this recent HUB. Few will take the time to read it as most want a 1 Minute HUB. I know you would love it though.
And thank your for reading one of my HUBS earlier today!
Pamela Lipscomb from Charlotte, North Carolina on September 03, 2011:
It is sad to know that people who are different are put in a different category than those who think they re "normal" Great writing on this hub!
Rachelle Williams (author) from Tempe, AZ on September 03, 2011:
@ shea duane - thanks for the positive comment!
Rachelle Williams (author) from Tempe, AZ on September 03, 2011:
@ Stayingalivemoma - Hey, at first I also thought I might be developing carpal tunnel as well, but that wasn't the case. Did they test you for TSFD?
shea duane from new jersey on September 03, 2011:
I found this article very intersting and informative. Best wishes to you and all who have TSFD.
Valerie Washington from Tempe, Arizona on September 03, 2011:
OMG I live in Tempe too! I was really shocked to learn about your disability. I have cramps in my hand that sometimes make me drop things. They haven't finished my diagnosis yet, but all I've found out so far is I have arthritis in my spine and possibly carpal tunnel syndrome in my hand. I also have some nerve damage in my leg from a pinched nerve in my back. I've been going to a neurologist for about 2 months now and they are sending me to pain management this month. I wish you nothing but the best. Keep your head up and God first and you will be fine! voted up and more