What we provide at the Ataxia Center.
The Ataxia Center is a referral center for diagnosis and management of patients with difficult and rare ataxia disorders. Patients are referred from clinical practices across the continent (see map). Evaluation consists of a detailed history of the timing and onset of neurological deficits, detailed neurological evaluation, review of outside tests and recommendation of additional studies. Patients are seen by physicians, health care providers and neurology trainees in team format. The goal is to make the most accurate and specific diagnosis possible, including with commercial or research genetic testing, to identify treatable conditions, to interpret and treat complications and to provide counseling and recommendations for adjustments to lifestyle and physical activity. Patients may be invited to enroll in one of several studies, including the Ataxia registry, genetic database, or biomarker studies. New patient visits last about 60 minutes.
What to bring to the Center.
If the patient has had MRI's of their brain done at their primary care or neurologists request, they are asked to bring the actual films or CD records with them, rather than the radiology reports. Similarly, recent EMG and sleep studies should be provided, although, when indicated studies performed at the University of Chicago are preferred.
Patients are also asked to bring results from any DNA testing that their referring physician has ordered. If DNA testing has not been done, one of the physicians in the University of Chicago Center may order them. Also if a lumbar puncture or spinal tap has been done those tests results are also needed at the clinic visit. The patient can ask their referring doctor to give them copies of any clinic notes that are relevant. Lastly, please fill out and bring any questionnaires and consent forms that you have been sent to your next visit. It is best to hand deliver this information to the office visit but if it needs to be sent please mail to
Victoria Staszak RN, MS/MBA
Ataxia Center Coordinator
Department of Neurology
AMB S237, MC2030
The University of Chicago
5841 S. Maryland
Chicago IL, 60637
Ask us about our "Wallet Letter"
When walking in public patients with ataxia are sometimes mistaken for haven been drinking and being intoxicated. We have found that carrying a letter from the Ataxia Center that explains that the symptoms and signs in ataxia resemble intoxication, but are due to disability. It also requests whether any help that is available could be given to the patient. This letter can be shown to a law officer or your employer should there be some question about your speech, coordination or balance.
University of Chicago Ataxia Registry
To better organize critical patient information, including clinical data, family history information, genetic testing results and contact information, the Ataxia research coordinator maintains a database and registry of ataxia patients and their relatives seen over a 15 year period. This information is stored in a password protected computer file that is approved by the University of Chicago research subjects protection board. This database enables approved researchers to identify patients potentially interested in research studies.
-Physical therapy: As movement specialists, the objective in PT is to identify and maximize movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. It involves the interaction between physical clients, families and care givers, in a process of assessing movement potential and in establishing agreed upon goals and objectives using knowledge and skills unique to physical therapists.
-Orthotics: provide devices that are applied to a part of the body to correct deformity, improve function, or relieve symptoms of the disease. An orthosis is an externally applied device which supports or assists the musculo-neuro-skeletal system. Gait evaluation, treatment recommendation and device fitting can be arranged in clinic at the time of your visit.
-Wheel Chair /walker/motorized scooter evaluation and recommendation is available when medically prescribed by your doctor. The necessary documentation will be provided to your insurance company to insure coverage.
-Speech evaluation for intelligibility and speaking rate has traditionally been measure of presence/severity of dysarthia. Interventions at detectable speech changes are available through speech therapy, available at the Medical Center. A referral to an outside facility such as the Rehabilitation Institute of Chicago can also be made.
-Occupational Therapy: Occupational therapy evaluation is available as needed: the objective is to assess the motor status, presence and level of pain, present functional abilities and difficulties, and occupational performances. This is best achieved by interviewing the patient, family members, and caregiver, information about home, bathroom layout.-Home Health Care: Ataxia may progress to the point at which a patient can no longer be independent in the activities of daily living (ADL’s),and the family may no longer be able to provide the needed care. A patient can receive services in the home from various health care professionals from a home health organization. A doctor’s order is necessary to initiate the process of identifying a need for the health care professionals and to bill the services to the health care insurance company or Medicare. An initial evaluation of the following ADL’s is required to measure a need for Home Health Care: dressing, bathing, feeding, toileting and transferring. Typically the need for assistance with three of the five activities will satisfy the requirements for benefits. However, these services are can only be provided for a limited time.
-Sleep Disorders: Sleep disorders and disorders of breathing in sleep of many types occur together with or as a result of many forms of Ataxia. We work closely with the Neurologists in the Sleep Clinic and the University of Chicago Sleep Center to obtain proper diagnosis and management.
-Social services: Social services are a vital aspect of the Ataxia Center, a resource for families seeking direction identifying alternative sources of payment for medical services and other financial needs. A referral is available upon request.
-Hospice and Palliative care: The World Health Evaluation (WHO) defines palliative care as the active total care of patients whose disease does not respond to curative treatment. Its goal is to achieve the best possible quality of life for the patients and their families. It addresses the control of pain and other symptoms in addition to any psychological, social and spiritual issues. For patients with advanced stages of the life-threatening forms of Ataxia, palliative care in the home or in a nursing home can be provided by a hospice program. In order to obtain care from a hospice, a patient must have a doctor’s referral indicating that the life expectancy of six months or less if the disease runs its “normal” course. The hospice may also require a signed statement from the patient and doctor which includes a DNR (Do Not Resuscitate) order. Hospice is covered by most private medical insurance policies and is part of the Medicare part A and Medicaid plans. Referrals and resources are available upon request.