Cerebellar ataxia is a rare neurodegenerative disease that has a major impact on movement and can also affect mental health and cognition. There is currently no cure for most types of ataxia and living with it can be challenging. Learning about your condition and how to manage your symptoms can help prevent complications, improve outcomes and maximize your quality of life.
The Keys to Living Successfully With Ataxia
Our team has put together a variety of resources to help you be an active participant in your care, advocate for yourself and make informed decisions. (Read about third-party links.)
Understand your condition
Build a strong support network
Ataxia Condition Information
Ataxia Overview With Dr. Liana Rosenthal
About Ataxia
Pediatric Ataxia with Dr. Kristin Baranano
Ataxia 101
Ask the Expert with Dr. Liana Rosenthal
Multiple System Atrophy Cerebellar Type (MSA-C)
National Ataxia Foundation
Physical Therapy
Exercises for People with Ataxia With Jennifer Millar
11 Exercises for Ataxia Patients
Little Steps, Big Gains
Evidence-Based Falls Prevention Programs
Find a Tai Chi Fundamentals Certified Instructor
Evidence-Based Program: Tai Chi Prime
Balance Exercises (PDF)
Pacing for Parkinson's
Neuro-Rehabilitation Team
Occupational Therapy and Home Safety
Occupational Therapy for Ataxia With Blakeney Patterson
Find Home Modification Resources Near You
Home Safety Modifications
Neuro-Rehabilitation Team
Speech-language and Cognition Therapy
As your ataxia progresses, you may experience difficulties with swallowing and speaking. Swallowing difficulty may include coughing or choking during mealtimes. Speech difficulty may include slurring your words and having to repeat yourself more often.
You may also experience difficulty thinking (cognition). Cognitive difficulties may impact memory, attention, information processing and reasoning. Contact a speech-language pathologist, who can develop a home program to help manage these symptoms.
Speech-Language Pathology for Ataxia With Rachel Glendenning
Strategies to Mitigate Speech and Swallowing Impairments in Ataxia
Ataxia and Cognition
Speech-Language Therapy Services
Cognitive, Swallowing and Speech Strategies
Find a Speech-Language Pathologist Near You
Stress and Mental Health
Cognition and Emotion in Cerebellar Disorders
Mental Health Resources
Find a Chronic Illness Therapist
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Many people with ataxia report feeling anxious, irritable or depressed. If you are experiencing mood changes such as anxiety or depression, discuss these with a mental health therapist to help cope with challenging thoughts, behaviors and feelings. Medication may also help improve your quality of life.
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Because ataxia is so rare, you are unlikely to find a mental health professional who is familiar with ataxia. However, there are many competent therapists who have experience treating people with other chronic illnesses. Ask your neurologist to help explain to your therapist the challenges of ataxia, or you can refer your therapist to the National Ataxia Foundation Website to learn more about the condition.
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People who have cerebellar ataxia may experience damage to the parts of the cerebellum that control cognition and emotion. This means that changes in mood and personality may have a physical cause, besides the psychological impact of living with ataxia. Further, changes to the cerebellum may lead to cognitive changes.
Driving
How to Self-Report a Medical Condition in Maryland
Genetic Testing
Ataxia Genetics With Weiyi Mu
Ataxia and Genetic Testing
Healthy Diet and Sleep
What is a healthy diet? Recommended Serving Infographic
Clinical Nutrition Services
Build a Trusted Care Team
To effectively manage your symptoms and experience improved health outcomes, it is important to work together with your healthcare team. Your team should include your primary physician, neurologist and, if applicable, a physical therapist, speech-language pathologist, occupational therapist and neuro-ophthalmologist.
A health educator is also an important resource available to you at Johns Hopkins. The health educator strives to empower patients by providing access to credible information, resources and social connectedness that support well-informed decision making about your health.
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Being diagnosed with ataxia can be overwhelming! Because it is a rare disease, sadly, there is not much public awareness. You may feel isolated and alone in your journey. The Johns Hopkins Ataxia Center has a health educator who provides patients and loved ones with ongoing support and education.
The health educator’s role is to:
- help improve your self-management skills so that you can effectively cope with your symptoms
- help you be part of a community, decrease feelings of loneliness and promote a sense of belonging
- improve your physical, mental and emotional well-being
- improve health literacy
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The health educator strives to empower patients by providing access to credible information, resources and social connectedness that support well-informed decision making about your health. Support services offered by our center’s health educator include:
- Monthly virtual patient and care partner support groups
- Virtual educational presentations featuring diverse ataxia subject matter experts
- Other in-person and virtual events, both social and educational
- Help with locating community resources
Support Groups and Educational Events
Ataxia Center Support Group
Johns Hopkins ataxia support group meets monthly on Tuesdays 1-2 p.m. ET via Zoom. This support group is for adult patients with ataxia.
Ataxia Center Virtual Presentations
Upcoming webinar: Speech Changes in Ataxia, presented by Leyna Schroeder, M.S., CCC-SLP.
February 19, 1-2 p.m.
Care Partner Events
Find a Support Group Near You
Ataxia Digest Newsletter Issues
Links to Third-Party Websites
The above resources are intended for informational purposes only. Third-party materials do not necessarily express the opinions of Johns Hopkins Medicine. These links are for convenience only, and the mention of any product, service, organization, activity or therapy are not intended to indicate an endorsement by or affiliation with Johns Hopkins Medicine.