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Caring for a loved one with a neurological disorder, such as a stroke or traumatic brain injury, can be difficult. Watching your loved one struggle with pseudobulbar affect (PBA), particularly undiagnosed or untreated, compounds this difficulty. It is important to remember the PBA is not a psychiatric disorder. It is a secondary
neurological condition resulting from a brain injury. You must be a champion when your loved one loses hope, isolates himself or herself, or appears depressed.
Here are some tips for being a caregiver to a loved one with PBA:
Individuals with neurological diseases, including traumatic brain injury and stroke, often have trouble obtaining an accurate diagnosis and appropriate treatment for the secondary conditions they experience because of their brain injuries. Pseudobulbar affect, or PBA, is an example of this type of secondary condition.
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.
The toolkit is available for free at biausa.org/PBA and at the link below.