Task Specific Focal Dystonia (Hand Cramps) - Dealing with Disability Discrimination
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.
- American Dystonia Society, a 501c3 Foundation Serving the Dystonia Community
American Dystonia Society is dedicated to improving the quality of life of all people with Dystonia focusing on awareness, advocacy, support, and raising funds for research. The leadership of ADS is comprised of all volunteers with various forms of
- Dystonia Medical Research Foundation
Foundation supporting research, awareness and support related to dystonia.
- Dealing With Invisible Disability: But You Look Well!
An excellent hub on dealing with invisible disabilities, by Hubber, Teresa McGurk.
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