Get ready for genetic counseling

Before your first appointment with the genetic counselor, take time to gather some information about your health and family medical history:

• Has anyone in your family been diagnosed with a neurologic condition like ALS, FTD (frontotemporal degeneration), or Parkinson’s disease — or a mental health condition, like schizophrenia or bipolar disorder? If so, share this information with your counselor. If you can, it’s helpful to gather details about each family member with a neurologic or mental health condition. For example, write down how old they were when their symptoms began and how old they were when they passed away (if applicable).
• Has your family member with ALS or a related condition completed genetic testing? If so, it’s helpful to try to get a copy of their genetic testing results to share with your counselor.
• Have you talked to a doctor about your risk of developing ALS or a related condition? If so, bring your notes from the doctor’s appointment or have your medical records sent to the genetic counselor’s office.

If possible, it’s ideal for your family member with ALS or a related condition to get genetic testing before you start genetic counseling. Why? If your family member has a genetic difference known to cause their condition, the genetic counselor can give you more accurate and specific information about your own genetic risk.

If more than one person in your family has ALS or a related condition, your counselor can recommend the best person to get tested.

You can also ask a support person (like a partner, family member, or close friend) to come with you for your genetic counseling appointment.