RESOURCES

For Patients

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TIPS FOR LIVING WITH PBA

  • Be open about the problem so people are not surprised or confused when you have an episode.
  • When you feel an episode coming on, try to distract yourself by counting the number of objects on a shelf or by thinking about something unrelated.
  • Take slow deep breaths until you’re in control.
  • Relax your forehead, shoulders and other muscle groups that tense up during an emotional episode.
  • Change your body position. Note the posture you take when having an episode. When you think you are about to cry or laugh, change your position.

These tips are not substitutes for medical advice. Talk with your doctor about additional ways to cope with PBA and whether a treatment plan may be appropriate.

Tips adapted from the American Stroke Association.

Two women talking over coffee

TALKING WITH YOUR DOCTOR AND EXPLORING TREATMENT OPTIONS

  • Between doctor visits, write down your questions and concerns. Use a method that works for you – a notepad in your phone, paper and pen, or an app.
  • Enlist the support of a caregiver, family member or friend. Bring him or her along to the appointment to help you remember the answers.
  • Describe your episodes. Consider using an app to keep track of the details.
  • Be honest about your concerns. Medical professionals are there to help and provide expertise!
  • Ask about treatment options. PBA can’t be cured, but it can be better controlled with treatment.
Join our community!

Get your copy of the PBA Self-Advocacy Toolkit

The Brain Injury Association of America (BIAA) produced a PBA Self-Advocacy Toolkit to provide self-advocacy information and resource materials.

The PBA Self-Advocacy Toolkit includes:

  • An overview of PBA, including signs and symptoms
  • PBA Episode Journal
  • Center for Neurologic Study-Lability Scale
  • Fact sheets on how to talk with health care providers, insurance companies, and navigating prescription drug coverage
  • Sample complaint letter to send to your state’s insurance commissioner, if you feel you are being treated unfairly
  • Tips on how to live with and care for someone with PBA.

Fill out the form below to join our community and get your free copy of the toolkit. When you join, you will also receive resources from the Brain Injury Association of America.

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    TIPS FOR COPING WITH PBA

    Living well with PBA is possible! Lessen the emotional toll PBA can take on everyday life. Try these tips.

    VISIT AND COMMUNICATE WITH YOUR DOCTOR

    Be candid about your symptoms and concerns to help lead to an accurate diagnosis and treatment.

    RAISE AWARENESS ABOUT PBA

    Talk to friends and family about how PBA affects you and what might happen. Educate them about potential episodes, so they are not overly surprised or overwhelmed when they occur.

    BUILD A SUPPORT NETWORK

    Identify people and resources that can help you feel less alone and more informed about managing PBA.

    SHARE YOUR STORY

    To inform or inspire others. Individuals living with or caring for someone with PBA are not alone.

    Share Your PBA Story