Preparing for Your Complex Movement Disorders Clinic Visit

A movement disorder is any unintended movement—or disruption of planned movements—that impairs a person’s function. Movement disorders range from mild to severe. There are many possible causes.

Someone who has a movement disorder might have the following signs or symptoms:

• Excess movements
• Movement patterns causing unwanted twisting of limbs or body
• Uncontrolled and often jerky movements 
• Slowed movements

Gillette’s Complex Movement Disorders Clinic treats people who experience movement disorders such as:

• Dystonia
• Tardive dyskinesia
• Chorea
• Rigidity
• Complicated combinations of different kinds of involuntary movements

Gillette’s Complex Movement Disorders Clinic brings together a multidisciplinary team of medical experts to evaluate and treat children and adults who have movement disorders. After conducting a thorough evaluation, the team might recommend appointments with additional specialists to help determine why a patient is having unintended movements. The team might also prescribe medicines and/or recommend therapies or surgical interventions to improve the patient’s function and well-being.

After your doctor refers you to the clinic, we call you to complete our intake process. We also schedule any evaluations or imaging appointments you need to complete before your Complex Movement Disorders Clinic visit.

Before your Complex Movement Disorders Clinic visit, we might ask that you first have one or more appointments with other specialists. Those appointments provide test results and valuable information about symptoms to help us evaluate a patient’s movement disorder.

Appointments before a Complex Movement Disorders Clinic visit might include:

• Neurology appointment
• Magnetic Resonance Imaging (MRI) exam of the head and back
• Video recording with Gillette’s Center for Gait and Motion Analysis
• Rehabilitation Therapies evaluation(s)

These appointments can occur either a few weeks or the day before your Complex Movement Disorders Clinic appointment. (For more details about these appointments, see Additional Appointments on page 3.)

Also before your complex movement disorder evaluation, we ask you to submit a video, fill out some questionnaires, and send us all available medical records, including:

• Birth and/or NICU records
• Laboratory studies
• EEG results
• Previous neurology evaluations
• Gait or motion evaluations
• Ophthalmologic evaluations
• Audiology (hearing) exam
• Current school progress notes/IEP
• Genetic testing
• Magnetic resonance imaging (MRI) or computed tomography (CT) of brain and spine
• Primary health care provider’s notes
• Specialists’ notes from other institutions

Please also send any other information you think would be helpful for the team conducting your evaluation.

Bring a list of all specialty doctors you see outside of Gillette, such as neurologists, pediatric rehabilitation medicine physicians, physical medicine physicians, orthopedists, cardiologists and pulmonologists.

Also bring a list of all medicines currently being taken.

During your clinic visit, several health care providers simultaneously perform an examination. Team members include:

• Neurosurgeon
• Neurologist
• Pediatric rehabilitation medicine physician or physical medicine physician
• Nurse practitioner
• Resource nurse

Gillette is a teaching facility. We encourage education for medical professionals. Your team might also include fellows, residents or students there to observe and learn. If you wish, you may request not to have observers there. If you’re concerned that large numbers of people in the clinic room might cause difficulties or anxiety for you or your child, please let us know.

Your clinic visit lasts about 90 minutes. During the appointment, the team:

1. Reviews all your information, including medical history and motion analysis video 
2. Performs an assessment and talks with you about your goals 
3. Steps out of the exam room to determine what treatment options will best help meet your needs
4. Returns to the exam room to discuss everything with you and decide upon a plan

Treatment options we recommend might include:

• Medication trials 
• Botox or phenol injections
• Intrathecal or intraventricular baclofen pump placement
• Deep brain stimulation
• Peripheral neurectomy
• Ventral or dorsal rhizotomy

After we discuss and/or recommend treatment options, we can provide you with additional educational information.

After your complex movement disorder evaluation (or, in some cases, before that appointment), we’ll ask you to complete a Rehabilitation Therapies evaluation with an occupational therapist, a physical therapist, and a speech and language pathologist. Depending on what treatment options we’ve discussed with you, you might also need additional evaluations or tests. (For more details about these appointments, see Additional Appointments, next page.)

Appointments you might need before or after your complex movement disorder evaluation include:

Gait and Motion Analysis

Regardless of whether or not they can walk, patients we see in our Complex Movement Disorders Clinic also have an appointment with our Center for Gait and Motion Analysis. During this visit, a physical therapist and a camera technician perform a video assessment, recording how a person moves while sitting, standing and lying down. Capturing this activity helps health care providers better understand which movements are within the person’s control and which aren’t—including unintended movements.

If a person can walk, we also record that. If the person typically walks in a variety of settings, we might schedule a second appointment so we can perform an extended analysis.

Please note: We might record the person trying some movements that are beyond the person’s ability. These recordings also give health care providers valuable information.

We might also ask you what activities or positions often trigger unintended movements.

The gait and motion analysis appointment lasts 10–45 minutes. Please bring a pair of shorts with an elastic waist for wearing during the video recording. Patients who walk should also bring any equipment used for walking, such as a gait trainer, a walker, crutches and/or braces.

A team of physical, occupational and speech therapists meets with you to assess current functional abilities. This helps us establish baseline information so we can better measure progress after treatment begins. The therapists might meet with you simultaneously so you can share information with all of them at once. Please bring along all assistive devices you use—including mobility devices, braces, splints and communication devices.

Physical Therapy

A physical therapy evaluation includes assessment of physical movements, muscle tone, mobility and other gross motor skills. This evaluation helps us develop categories of abnormal movements we see occurring and determine how those movements—and muscle tone—are affecting function.

Occupational Therapy

An occupational therapist interviews you to help establish functional goals and assess current daily-living skills and level of independence. We also assess upper-extremity function, and we might assess fine motor skills related to goals your family identifies.

Speech Therapy

A speech and language pathologist evaluates abilities to communicate wants, needs, thoughts and feelings throughout daily life. We ask questions and record samples of communication by speech or other means. We use our findings to identify ways in which a movement disorder is affecting speech and communication.

Swallow Study

A videofluoroscopic swallow study (VFSS) is a video X-ray scan of the mouth and throat we perform while a person eats and drinks. The appointment lasts 60 minutes, but the test itself takes less than 15 minutes. Seated in a feeding chair or an adaptive seat, the person eats some food mixed with a solution containing barium, which helps us more easily see the food’s movement in the X-ray images.

Depending on the person’s age, current diet recommendations, and oral motor skills, the food we give might be a liquid; a soft solid, such as pudding; or a hard solid. Radiologists—doctors who specialize in imaging tests—conduct the VFSS in the Imaging department with the help of speech and language pathologists and radiology technologists.

Brain and/or Spine MRI

To further evaluate brain anatomy and how it might be affecting symptoms, we might ask someone to have an MRI. This test requires a person to lie still while a scanner captures images of the brain, spine and other internal body parts. The MRI lasts 1 to 2 1/2 hours. Often, people need to be sedated for it. If sedation is necessary for you, an Imaging resource nurse will call you with instructions about:

• Eating/drinking guidelines to follow before the test
• Obtaining a medical history and having a physical examination before the test

During the test, we might give contrast dye through an intravenous (IV) line. Please tell Gillette if the person having the test has ever had a reaction to contrast dye.

Neuropsychological Testing

Neuropsychologists evaluate cognitive, academic and behavioral effects of neurological conditions. They focus on understanding brain function—specifically, how the brain directs behavior and learning. A neuropsychological evaluation might help us establish baseline information that we can later use to measure and compare functioning over time, before and after treatment for a movement disorder.