Building a Multi-Level Support System

This article was published in the Dystonia Dialogue.

Living well with dystonia often requires complex treatment plans, ongoing medical appointments, and careful self-monitoring of symptoms and response to treatment. Having a multi-level support system can help you feel and function at your personal best. Social support in particular can have dramatic and positive effects on quality of life.

A multi-level support system is a collection of people, organizations, and resources available to support daily living and overall well-being. These can include:

  • Medical Experts
  • Family & Loved Ones
  • Friends
  • Co-Workers & Career Mentors
  • Recreational Interests
  • Peer Support
  • Professional Mental Health Support
  • Wellness Practices
  • Spiritual Support
  • Complementary Therapies
  • Community Resources

Keep Your Friends Close

Consider creating a go-to list of people and organizations you can count on. Have their contact information readily available in your phone or address book so you can reach out when you need to.

  • Family members
  • Friends
  • Doctors and medical professionals
  • Mental health support
  • Spiritual advisor
  • Crisis resources
  • Dystonia Medical Research Foundation

DMRF resources are available to connect you to support groups and online forums as well as mental health resources.

Financial Support

Americans with disabilities live in poverty at more than twice the rate of people without disabilities. Sixty-five percent of adults with disabilities participate in at least one safety net or income support program. These resources may help fortify financial security:

Drug manufacturers often offer financial assistance programs to help individuals who meet specific criteria afford treatment. This includes the companies that manufacture botulinum neurotoxins, one of the most common dystonia treatments. Click here for more information.

The Job Accommodation Network (JAN) offers guidance on workplace accommodations and job protections for employees with disabilities, including dystonia. Go to askjan.org and search ‘dystonia.’

JAN can also direct you to state vocational rehabilitation agencies that help individuals with disabilities obtain and/or maintain employment.

The US Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs provide assistance to people with disabilities. Information about eligibility and the application process is available at: ssa.gov/benefits/disability

DMRF offers a fact sheet of Frequently Asked Questions about Social Security Disability Benefits.

States and municipalities may offer assistance programs for local residents. Contact your state Department of Human Services Department to make sure you are not missing out on programs for which you may be eligible.


The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.