Drake D. Duane, MD
Chairman, NSTA Medical Advisory Board
Director, Arizona Dystonia Institute
10210 N. 92^nd St. #300, Scottsdale, AZ 85258

In the early to mid 1990’s, a young woman named Sharon Meekcoms, who later in that decade became Sharon Kochert, chaired the Arizona branch of NSTA. Her energy, warmth, tender and supportive nature, as a former dental hygienist, was an asset to the group in formation and to the individuals within it. Sharon’s own story was marked by physical therapy, an initial excellent response to botulinum toxin, followed by the development of antibodies against the toxin, successful selective denervation surgery by Dr. Carlos Arce in Jacksonville, Florida, and maintenance with low dose oral medications thereafter.

Her health problem had an impact on her personal life, but she never allowed that to stop her. With personal life changes, she worked hard to restore relationships with family members, including her daughters.

President’s Column

by Larry Gulick, Ph.D.

The DNA in cells contains the information for our cells to effectively communicate with each other. Occasionally this communication system doesn’t always work as it should, and the result is that our cells function differently than the way they were intended. Sometimes the messenger RNA from the DNA breaks down causing damaging information to become silenced in cells—and this could lead to understanding the cause of many disorders in the body.

Craig Mello (University of Massachusetts) and Andrew Fire (Stanford University) received the Nobel Prize in 2006 by partly explaining how RNA breaks down into multitudinous parts, causing the messages the cells receive to be changed from the original gene communication. This phenomenon, called RNA interference, is part of a naturally occurring mechanism for turning off destructive genes and helps scientists understand how this procedure can

limit harmful consequences to the functioning of the human body when this process comes into play.

A friend of mine sent this piece that was presented by a lecturer on stress. I think we all realize what stress can do to people like us living with Spasmodic Torticollis. I like the way this gentlemen explains stress and how he handles this problem. During a lecture, when explaining stress management to an audience, he raises a glass of water and asks,” How heavy is this glass of water?" He would answer his question by saying, “The absolute weight doesn't matter. The longer I hold it, the heaver it becomes.” If we carry our burdens all the time, sooner or later, we will be overwhelmed and won't be able to carry on. You have to find a way to refresh yourself. I know some people take naps and some who are able to distract themselves to ease the pain. I try and use humor. This helps me take away the pain for a period of time. Here are some of the ways of dealing with the burdens and stress of life.

A call I recently received from a professor gave me the incentive to write my article on different subjects which I find important to everyone with Spasmodic Torticollis.

First of all, I can’t begin to emphasize the need to be properly diagnosed. The only way to do this is by seeing the right specialist. A general neurologist can diagnose ST and all forms of dystonia but what’s important is the treatment you receive. In my opinion this really needs to be done by a neurologist who specializes in movement disorders. There are many reasons for this, but most importantly they have a lot more experience in deciding how to treat the symptoms of the various movement disorders. They know the dosages to administer for the particular problem and utilize an EMG (Electromyography machine) to pinpoint the overactive muscle(s). They are knowledgeable of the oral medications and know how to tailor it towards your treatment. From the experience I have gained throughout the years, I’m a firm believer that treatment for ST should be done by a movement disorder specialist rather than a physician that deals with all neurological disorders. NSTA has a list of neurologists who specialize in movement disorders from around the country including a list of physicians that perform surgery for ST. Do your homework. Don’t settle for just anyone treating you! Anybody can say they can inject Botox or Myobloc, but it has to be administered properly, and not just “anybody” can do this. Don’t be afraid and ask to speak to some of their patients about their treatments. This can be done directly through their office. The office can ask some of their patients to get in touch with you. This way you can get an insight into the treatment they are receiving. The same goes for surgeons. Don’t jump into anything without first checking out their credentials. You can talk to their patients who have undergone surgery to find out more about them. This is your right! You should take advantage of getting all the information you can get before going ahead with any treatment.

Hello!

I’m writing because, as an ST patient for 31 years, I have, like all of us, tried everything from drugs to Botox to PT to acupuncture – all of it. You know the story. In the end, there is one product that I find to be the most helpful: The Nap travel pillow, available from the Brookstone website or catalog (not always available in the store).

This pillow is in a U shape and is filled with microbeads, so it conforms to my neck and offers gentle support when I’m sitting, riding in a car, AT THE DENTIST (a difficult time for all of us), and many other places. It also comes with a washable cover, which many of these types of pillows do not. The cost is $25, and it is well worth the price. I wanted to pass this information on in hopes that it might help others. I don’t know if you print brand names in the newsletter, but I’m hoping you do.

Thanks for all you do.

Sincerely,

Kathryn Parker

I want you to know that many symposium attendees have been in my thoughts during my absence. Although I had wanted to attend the last few symposiums I just couldn’t as things were going on in my life that prevented me from traveling. Nonetheless, you are again reading a column from me in the NSTA’s Magazine. I hope it won’t be the last.

I really enjoy writing. It is an outlet for my dystonia. When I’m writing I tend not to think of the discomfort or the tremors that are often present. I hope you remember my first book, LEARNING, COPING, LIVING. Since then, I have written two other books. The first of the two is a children’s picture book entitled “The Talking Baseball.”

“The Talking Baseball” tells a story about patience, dedication and sharing. It is a story about Jake, a young boy who discovers a baseball at a yard sale. He is amazed that this unique ball can actually talk and teach him how to play the game. As time passes, Jake’s passion for his favorite sport grows and his improving skills make him stand out in Little League. I actually wrote it for my grandchildren, but then I decided to share it with other boys and girls. I’m glad I did because it has really taken off and I’m very proud of that fact. The Talking Baseball is now available for ordering online at: www.thetalkingbaseball.com and at your local bookstore.

The third book is completed and in the hands of the publisher, but I had asked that they put a hold on printing the book. Not to worry; it will be out hopefully by the October symposium in Orlando. This book is called, “HURRICANE WITHIN ME.”

The Dystonia Advocacy

Committee

I was much unprepared for the experience I was about to have for Advocacy Day hosted by the Dystonia Advocacy Coalition (DAC)* in Washington. D.C. this past April. But the next day’s experiences helped remedy that bit of uneasiness.

The first day included getting to know some of the other people we would be sharing this experience with. Stephanie Vance, a speaker who has been part of many lobbying activities for several years presented the proper techniques for having a successful interaction during our brief time with the politicos the next day.

We visited with state politicians in their offices on Capitol Hill and presented our reasons for them to support more funding for the National Institute of Health. We hoped by doing so more research dollars would be available for dystonia. We also encouraged them to support a bill to reduce genetic bias and support the need for funding medical humanitarian devices, such as those needed by DBS patients. We were greeted warmly by all the representatives involved in our lobbying effort, and were assured that they supported our cause.

About one hundred of us from all over the country had about three hundred meetings during our push on the Hill. After it was all done, I felt that I had been a part of something important and that I had accomplished something good that day.