a grain of salt

The doctor increased my mirapex dosage again today to .5 mg. I asked him if he thought I should start getting used to the movement as it is. He said no, he thinks we'll find something to take care of my condition almost completely. I didn't know doctors could make those kinds of promises but I am taking it all with a grain of salt.

We discussed when the twitching and moving happens. As far as I can tell, stress or nervousness doesn't affect it... It just happens when I am focused on doing something or talking to someone. He explained to me that it's not anxiety driven but neurological, it happens when there is a specific brain activity. This means that there probably isn't much I can do in terms of controlling stress to minimize it. This was kind of discouraging. I can't teach myself to better control it.

I noticed today that I still have problems writing. I've always had a hard time signing credit slips when I'm at the doctor. I tried filling out a rebate form today and found it really difficult. This is a problem if I still want to eventually get back to teaching. The twitching doesn't happen so much anymore when I'm using a computer. Go figure.

I was kind of displaced from home on Saturday night so I drove to mountain view (about 20 minutes) to stay with my sister. Luckily, I didn't have an episode where the twitching was out of control. The drive wasn't as difficult or scary as I expected, late at night and early morning had light traffic. I'm debating on going to a friend's birthday dinner on Friday, the drive to Palo Alto would be a longer drive.

unpredictable

I'm starting to get discouraged with dystonia and life again. I look and feel like shit. The torticollis is just so unpredictable. Some days I feel normal... others it's back to the worst again. I still have to teach myself that I can't control it, I can't control how people feel about me, and let go. Let go of caring what the world thinks and do whatever the hell I want. It's funny because there's still a part of me that believes that someday it'll be gone, either on it's own or from the treatment.

I've noticed the one muscle on the right side of my neck has finally relaxed so that it's not so tensed and prominent as it was before. When my head twitched you could see the muscle flex and tighten.

I'm going to try to drive myself to the doctor's alone tomorrow.

botox - 8 days

There hasn't been significant progress for the past few days, but I do have to take note that there is definitely less pain than a few weeks ago. There was a time when I would wake up and immediately exclaim "ow!". Yes, definitely not as painful or stuck as before. Not to let myself down too much, I do admit that I was hoping for a more dramatic change, a cure if you will.

Thoughts have been turning to work. I have to call my boss next week, the last time I had any type of communication was back in January and even that was over email. I'm going to update her on my diagnosis and treatment and then tell her she can tell whomever asks about it. I would rather go back with people knowing as much as I can rather than answering a bunch of questions. More and more, however, I'm thinking that if I never regain complete control of my movements there's just no way I can do the job that I have right now. It might be best if they laid me off.

But then that also means I have to go into an interview explaining my condition and asking someone to look beyond it to my skillset and talents. I used to be such a confident person and I'm afraid I can't convey that sort of charisma that people look for in candidates. I'm afraid that people will think I am mentally disabled or crazy when in fact, the rest of me is completely fine.

botox - 6 days

6 days. I notice that the dystonia isn't as sustained anymore, so that it appears that I just have a weird twitch or tic again.

My main doctor today told me I look much better. I told him I feel much better. He was really happy to say the least and increased the dosage of Mirapex. I know these days to be more patient and cautious as to getting to my hopes up too high, but he told me that he thinks I'll have an even bigger smile in terms of my condition next appointment. I think he wants as much as I do to enjoy life again.

In other good news, I just found out that the past 6 months I've been on disability has been non-taxable income. I don't have to claim any of it for taxes. Dad says since disability is a percentage of my regular income I might be getting more money back this year. Also good news, I found out that even though the Parkinson's Institute is out of network for me, any treatments I get from them will be covered for 60% by UHC as soon as I hit my deductable. In terms of the treatment I've already received, I've already hit it.

It's funny how some things do work out for you.

Dilbert's Scott Adams

He may be the closest thing to a celebrity. It turns out that Scott Adams, the creator of Dilbert, has a focal dystonia in his hand.
From the Washington Post
Scott Adams, Drawing the Line

Dilbert's Creator Can't Always Make His Hand Follow Directions. But He's Found a Work-Around.

By Samantha Sordyl
Washington Post Staff Writer
Tuesday, May 10, 2005; Page HE01

For most of his career, nationally syndicated cartoonist Scott Adams has needed just two hours to produce a three-panel episode of "Dilbert," his celebrated comic strip satirizing cubicle life and misguided management. Those two hours take him from initial pencil sketch to the final inking of such beloved miscreants as Dogbert, the evil management consultant, who emerges from the pen in "one unbroken smooth line" that extends from his nose to his tail, Adams said.

But one morning last November, working in his home office in Dublin, Calif., Adams, 47, found that smooth line nearly impossible to execute.


Scott Adams Draws Dilbert
Scott Adams draws Dilbert using a Wacom tablet at his studio in Dublin, California. At right are old pencil and ink drawings of Dilbert. (Lou Dematteis - Lou Dematteis)
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"My pinky started moving again," he said. "Specifically, my pinky flexes. It goes stiff; it goes straight out."

That was a cue that his focal dystonia was flaring up to threaten his career once again. Adams was diagnosed with the condition -- a neurological movement disorder, marked by involuntary muscle spasms--back in 1992, around the time he launched "Dilbert." The problem affects his right hand -- the one he uses to draw.

"I would look at [my fingers] and tell them to do one thing, and they would do jagged things instead," Adams recalled. "I'd have full muscle control for everything -- except putting a pen to a piece of paper."

The first time around, he'd foiled the condition by drawing left-handed. Meantime, he was doing a conditioning exercise he devised: During the meetings that filled his old day job, he'd hold down a pen tip to paper until he felt a twinge, then pick it up quickly and rest his hand before a spasm would set in. He did this repeatedly, extending his pen-gripping time bit by bit. Eventually, he said, the problem "just went away."

But it was an arduous process he wasn't eager to repeat. "I couldn't go through another year like that," he said.

This time Adams approached the problem like the computer nerd he says he is, and found an answer online. The fact that his comics have continued uninterrupted since he began using a new drawing tool in January speaks to his success. Only his very closest followers may have noticed subtle differences in recent strips -- like Dilbert's too-skinny arm and oversized nose -- while the cartoonist was mastering the new technique.

But Adams is satisfied the approach works.

"[I figured] if I could find something that allowed me to draw that didn't have the same look and feel to my brain," he said, "my brain would not stop me from doing it."

Barbara Karp, deputy clinical director of the National Institute of Neurological Disorders and Stroke (NINDS), who has researched dystonia for 15 years, said Adams had the right idea.

The first line of treatment for dystonia, she said, is "changing techniques."

"It's just the most straightforward thing to do," she said. "It doesn't cost anything. [There are] no potential side effects. . . ."

The only problem, she said, is that often the approach doesn't work.

A Puzzling Condition

Focal dystonia, which can affect the hand (where it's commonly called "writer's cramp" when it affects writing), the neck (the most common site), eyelids or vocal chords, is something of a mystery. First reported in people who do fine finger work, including writers, seamstresses and musicians, it affects an estimated 29.5 individuals per 100,000 population -- or about 87,000 people nationally -- according to calculations made in a 1998 study. Though its causes are largely unknown, "we think there's a genetic component," Karp said. Often, focal hand dystonia patients are people who use the small muscles of the fingers and hands.

Whether overuse or misuse play a role in focal dystonia is debated, Karp said. The overuse theory meshes with Adams's experience, particularly since his case emerged during what the cartoonist calls his "running years" from 1989 to 1995, when he'd get up at 4 a.m. to draw "Dilbert" before heading off to his day job.

"We think the disorder is largely associated with the basal ganglia," which are deep brain structures that help regulate movement, Karp said. One theory is that repetitive movements or some other cause somehow trigger abnormal learning patterns in the brain. That makes the sources of the problem difficult to treat, Karp said. "We just treat the symptoms."

While changing manual techniques is a logical first course, often the change is not different enough, Karp said. "Sometimes the problem is more widespread in the brain and it affects multiple tasks."

Other treatments include rest, physical therapy, occupational therapy and medications. The most common drug treatment, said Karp, is injection with botulinum toxin, more commonly known by its brand name Botox, which weakens overcontracting muscles. Internationally famed concert pianist Leon Fleischer credited Botox for restoring him to two-handed piano playing last year, decades after focal dystonia in his right hand left him able to strike the keys with only his left hand.

Botulinum toxin "relaxes the muscle, and thereby releases the spasm," said Karp. But, she said, Botox treatments can cause more muscle weakness than is desirable.

There are also highly individualized tricks that some patients practice to help them cope. Some with focal dystonia affecting their mouth and jaw say holding a toothpick in their mouth appears to ease symptoms, said Karp.

"Sensory training" for focal dystonia patients is a "hot field of interest right now," she said. In some studies, patients are learning to read Braille to retrain the sensory area of the brain that may provide feedback on motor performance. If they can correct the distorted sensory processing, said Karp, they might be able to correct the motor problems.

Geeks to the Rescue

Since January, Adams has been sketching and drawing "Dilbert" using an interactive display developed largely for graphic artists. Produced by Wacom Technology, based in Vancouver, Wash., the Cintiq 21UX LCD tablet allows artists to use a stylus on a pressure-sensitive computerized tablet. For Adams, this means he doesn't have to push down hard to draw. In addition, the software requires him to draw on an enlarged scale. Together, these effects keep his brain from prompting his hand to freeze up, he said.

Adams said he bought the product, which retails for about $2,500, and has no financial ties to the company. But Wacom posted Adams's photo on its Web site, along with the photos of other graphic artists who use the device. (While most cartoonists use computer technology at some point in the drawing process, Adams is one of the few who use it exclusively to produce his cartoons, said Steve Behling, managing editor of comics at United Media, the company that syndicates Adams's cartoons.)

For Adams, mastering the new tool -- which looks like the monitor of a laptop computer on a tiltable, rotatable stand -- involved a learning curve. In January it took him six hours to turn out his first Cintiq-produced "Dilbert" strips, which ran in March.

There were imperfections. "The hardest part was the body and head shapes" -- anything with a curved line, Adams said. Adjusting to the change in scale -- the software doubles Adams's usual 4-by-4-inch panel size, making Dilbert's nose about the size of a quarter -- also took time. "They definitely looked different for a few months. Suddenly, one of the characters would look too small. Things were too big or too small," said Adams. "Artistically, I just didn't have the eye" to adjust for the characters' suddenly larger size.

But soon he was getting the hang of it, and expressing relief that the method let him preserve the integrity of his work. To have somebody else draw the strip -- something some cartoonists do -- "would greatly decrease my happiness," he said.

"One of the reasons why you like to do your own drawings is, your style changes over time. And there's something about that that keeps it fresh to the viewer. This will be yet another change that I think people will enjoy without knowing why."

As of last week, it took him only an hour and a half to produce a strip, he reported.

You can't blame him for feeling he's got the upper hand again over his focal dystonia. That's better than things looked back when he first received the diagnosis. "I would sometimes sit in a crowded restaurant," he said, "and say, 'You know, I'm the only person in this restaurant who can't draw.' " ·

Resources

· American Academy of Neurology, a Minnesota-based professional organization. 800-879-1960 or 651-695-1940, http://www.aan.com/ .

· Dystonia Medical Research Foundation , a Chicago-based nonprofit advocacy group. Sponsors support groups and symposiums open to the public. 312-755-0198, http://www.dystonia-foundation.org/ .

· We Move, a New York-based nonprofit advocacy and education group. Web site provides educational information and links to support groups for patients with neurological movement disorders. http://www.wemove.org/

· National Institute of Neurological Disorders and Stroke , http://www.ninds.nih.gov/ (click on "disorders"), 800-352-9424 or 301-496-5751; TTY (for people using adaptive equipment): 301- 468-5981.

· National Spasmodic Dysphonia Association , Illinois-based advocacy group for people with spasmodic dysphonia, a form of focal dystonia affecting the voice. 800-795-NSDA (800-795-6732), http://www.dysphonia.org/ .

· National Spasmodic Torticollis Association , a California-based nonprofit advocacy group for people with spasmodic torticollis, also known as cervical dystonia, which affects the neck. 800-HURTFUL or 714-378-7837, http://www.torticollis.org/

Insurance catches up

Maybe I'm just getting a litle more comfortable with it, or maybe it really is getting better. My family is telling me the torticollis looks better and today I was able to go with my sister to Valley Fair in San Jose. I haven't been to Valley Fair in 6 months. I was also able to shave with a blade for the first time in 2 months yesterday and I'm finding it easier to watch tv and use the computer. I just don't want to jump the gun and say I'm better when I'm not.

The day I can drive again, the day I can use my camera again, will be the day that I resume my life.

...It turns out that the Parkinson's Institute isn't covered by my health insurance, United Healthcare. I had to pay for my first visit out of pocket and I have no idea if or how much the botox is going to be covered at all. UHC said that they do cover botox, but the issue of treatment at an out of network provider is iffy. When the doctor prompted us about it my sister and mother both said to go for the treatment and to figure out the insurance later, they just didn't want to see me suffer anymore.

So, in the next few weeks I have to figure out how much insurance is going to cover me. I'm going to call them again on Tuesday. If things look bad, then I'll have to ask Dr. Liang to refer me to someone at Stanford's Movement Disorder Clinic.

...I have an appointment with my original doctor tomorrow. I have to explain to him that Dr. Liang re-diagnosed me with the Dystonia and then figure out a way to keep him in terms of medication management. I want to keep seeing him to see if there are any other meds that can help me along with the botox injections. The reason why I need to see him is that I can see him more often... and of course, he is cheaper because he's in-network.

Janey, my RN friend, affirmed me yesterday. The medical insurance system in the United States sucks.

As discouraging as it sounds, I actually don't really care. While I do have to figure out how to manage disability and getting back to work at some point and the medical bills of my future, that challenge is nothing compared to the end of the world when I was coming to grips with my condition just months ago.

Twisted Preview

"I want a life back where I am participating in things. Right now, I feel like I'm a prisoner in my body and in my home."

Twisted.

You know, as I learn more about this condition I'm realising more and more that at least for right now, I don't have it as bad as some people do. There's an onset of it for 5 years so it may progress. I am unable to do a lot of things for myself, keep mostly to myself at home, but for right now I don't see myself as disabled.

rehabilitation

It's day 3 of botox treatment. I've noticed a lessoning of the pain and a slight improvement in my ability to sustain my head forward. Nothing remarkable yet, but we're gettin there.

At the Institute the other day, they weighed me at 135 pounds. 6 months ago, I weighed 155. Audrey compared my wrists to hers yesterday. That's where you can notice the most difference in my weight: in my arms, and collarbone, and the prominent structure of my face.

Rehab will definitely include gaining some of that weight back. I look weak and sickly and look like this condition has beaten me down.

Introduction

Yesterday I had my first visit with Dr. Liang at the Movement Disorders Clinic at the Parkinson's Institute in Sunnyvale. I was diagnosed with Dystonia (Cervical Dystonia) after 6 months of being treated for tic, mad cow, huntington's disease, anxiety, parkinson's disease and everything under the sun. All misdiagnoses for a gradual loss of control over the movement of my head. When it first started, occasionally my head would move to the left on it's own. During months 3 and 4, my head would shake uncontrollably, as if I was suffering from Parkinson's disease. By the time I went into the Movement Disorders Clinic yesterday, my head was completely stuck turned to the left. Almost 6 months, and I've tried several drugs, at times feeling like a chem-lab, with no luck.

At 27 years of age I've enjoyed moderate happy turns as a performer, a musician, a teacher, a sales guy, an analyst, and an advertiser. In essence, I've built a life on working with people and being in front of people. As the onset of this terrible disorder progressed I was left feeling hopeless and depressed and thought I had lost all of that personal development and all that I enjoyed in life. I was near suicide.

Yesterday, the doctor injected 3 shots of botox into 2 areas of my neck in chemodenervation to stop the twisting. I have no idea if this form of treatment will work but feel more confident that there is treatment out there that will help me. I want my life back and am determined to fight for it. This is my battle.