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Dystonia Information
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Knowledge, the Key to Understanding U.S. Department of Agriculture, Research,
Education, & Economics, Summer 1997 DAN encourages REE employees who have or are familiar with a disabling condition to share in future issues. Comments on content or suggestions for future issues may be forwarded to Sue Dixon, Recruitment, Examining, & Demonstration Staff , Room 113, 6305 Ivy Lane, Greenbelt, Maryland 20770. Phone: 301-344-0134; FAX: 301-344-2962; E-Mail: sdixon@ars.usda.gov REFLECTIONS ON LIVING WITH DYSTONIA Terry A. Howell, Research Leader (Agricultural Engineer) Introduction | What is Dystonia? | Dystonia Treatments Dystonia attacked me in 1966 when I was a sophomore in college. Dystonia is rare; only one in 10,000 has developed the type I had then. Although I have lived with dystonia continuously since then, it was not until 1991 that my doctors really diagnosed me with dystonia. I had a form of Dystonia called spasmodic torticollis (or just ST for short) diagnosed in 1967 after visits to many specialists and even the Mayo Clinic in Minnesota. ST caused my neck muscles to twist my head to one side. In fact ST is so rare, the first person I ever met with ST (outside doctors' offices) was this past spring. Although ST caused many problems, my life was quite normal. I kept going to college, participated in the corps of cadets at Texas A&M University, completed my degree on time, and remained active in sports that I loved -- golf and basketball. I got married my senior year in college. With much help from my wife, I made it through graduate school completing my M.S. and Ph.D. degrees, and she completed her B.S. degree. During these five years we were blessed with two children, and somehow we managed to keep our sanity too. Our third child was born in 1978. Sue and I have been married twenty-seven years. From 1968 until 1991, my dystonia problems were relatively minor. In the late 1980s, my voice began to get weaker, and it sounded hoarse or strained. In 1991 other dystonia problems became more evident (tremors in my head and hands) besides the ST and voice (called spasmodic dysphonia or just SD for short). I was never in constant pain like many with ST, but SD really began to change my life and even forced me to make some workplace compromises. ARS offered me a job in 1979 and lured me away from Texas A&M University where I'd been teaching for 4 years. I do not think anyone even cared that I had ST (or even knew it despite the obvious strange posture of my neck). I never made "a big deal" out of ST, but with SD it became more difficult to "disguise" my condition. I doubt many at my laboratory even know what my condition is named or much about it. Of course my colleagues throughout the U.S. that have known me for some time probably have recognized the changes that have occurred in recent years, particularly as my voice changed. However, I was asked to serve as research leader (RL) of the Water Management Research Laboratory in 1994 and still serve in that capacity. What problems has dystonia caused in my life and in my job? Well, ST has not been a major limitation, although for many others it is a great disability often resulting in loss of job function. Dystonia has affected my hand and arm muscles that influence my handwriting. Even in college, my handwriting was getting noticeably poorer, and now it is barely legible even to me! Fortunately, I can use computers for most of my day to day needs. SD has been the biggest hurdle with which to deal. Simple tasks like staff meetings, telephone calls, and giving speeches are now major jobs. I use e-mail and fax communication more often now rather than attempting to send handwritten notes or even calling someone on the telephone. Of course, communicating well orally is necessary for a RL. So I use handouts and spend more time making my visual aids (slides or overheads) as effective as possible. SD does make it difficult to speak clearly and distinctly at times. Return to page index ************* WHAT IS DYSTONIA ************* Dystonia is not a new disease. It has no known cause and no definitive test for diagnosis. Dystonia affects nerve signals from the basal ganglia in the brain to various muscles. Some dystonias are inherited, some result from drug induced effects, and some result from brain injuries. I feel that my dystonia may be related to injuries (brain concussions when I was a teenager) from horse-back riding and football/basketball in high school. Of course, some chemical contacts on our farm may have environmentally triggered mine. Dystonia is classified as primary or idiopathic (no known organic lesion); secondary when some known insult occurred to the basal ganglia (trauma, toxins, drugs, neoplasm, infarction, or other organic causes); or classified by the body region involved. Dystonia is also known as a movement disorder. Dystonia is usually diagnosed by trained neurologists or specialists in movement disorders (Parkinson disease although not related to dystonia). Generalized dystonia (or idiopathic torsion dystonia) affects a wide range of body areas. It usually occurs in childhood (especially in early teen years), and often affects the limbs and feet. Focal dystonias affect specific body parts, but sometimes patients may suffer from more than one type of focal dystonia. These typically attack at mid life (40s to 50s). Common focal dystonias are the following:
Blepharospasm
Oromandibular dystonia
Orofacial-buccal dystonia (Meige's or Brughel's syndrome) Spasmodic dysphonia
Writer's cramp (or occupational dystonia)
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*********** HOW IS DYSTONIA TREATED
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Dystonia is treated by a variety of medications designed to reduce muscle spasms. In a few
cases, specific surgery may be
needed, but often surgery is not a viable option. Several forms of focal dystonias have been
treated for a few years with a
Botulinum Toxin Type A marketed under the name BOTOX. Botox is produced by a bacterium
called Clostridium
botulinum, which is the bacteria that cause botulism. Botox is injected in extremely small
amounts directly into affected
muscles to "weaken" the muscle or to actually "block" nerve signals telling the muscle to contract.
Botox is finding wider
use even including uses by cosmetic surgeons for wrinkle removal (crows' feet around eyes, etc.)
The Botox has a
relatively short life span (from weeks to several months) as new nerve endings grow. It sometimes
takes anywhere from
5-10 days for Botox to begin affecting the muscles. Botox does not move far from the injection
point and is bound into the
injected muscle until it dissipates.
Return to page index *********** CELEBRITIES WITH DYSTONIA
***********
A few well-known people with dystonia include Chip Hanauer who has SD and pilots the
hydroplane, Miss Budweiser. He
is the record winner of 10 Gold Cups. He serves as a national spokesperson for SD. Senior PGA
golfer Doug Sanders has
recently begun playing competitive golf again after developing ST. Several professional musicians,
like the pianist Leon
Fleischer, have developed occupational dystonia (or writer's cramp) that cut short their
careers. Diane Rehm (talk show host on National Public Radio) developed SD that affected her career
(see links below for a Nightline interview with her by Ted Koppel).
Return to page index ************* DYSTONIA DIAGNOSIS
************* Diagnosis of dystonia is difficult. Ellen Frontis compiled an interesting survey for the National
Spasmodic Dysphonia
Association (NSDA) that reported the following facts:
71% had difficulty in obtaining a correct diagnosis
(70% reported that physicians who they consulted were unaware of
the disorder)
75% reported they consulted general practitioners and
only 4% of the respondents reported being correctly diagnosed
by general practitioners
On the average, patients had to travel 160 miles for
treatments
71% reported reduced social life; 31% reported
reduction in work hours; and 26% reported they could not work
Return to page index ************* DYSTONIA ASSOCIATIONS
*************
Dystonia Medical Research Foundation
National Spasmodic Dysphonia Association
National Spasmodic Torticollis Association
Benign Blepharospasm Research Foundation International Tremor Foundation
Worldwide Education and Awareness for Movement Disorders (WE MOVE)
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********* DYSTONIA INTERNET RESOURCES
********* Newsgroup Chatgroups Bulletin Boards
Return to page index *** TERRY'S DYSTONIA BOOKMARKS
***
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