Our meeting with Dr. Williams was wonderful! She took extra time to patiently address our concerns and questions. She did a brief exam which confirmed the obvious - that Lorie is dealing with hemiparesis (weakness on her right side) and spasticity (muscle tightness) that makes her movement difficult when added to the balance issues. We are looking at PT options to help with range of motion and loss of muscle tone, while also looking at her gait.

While there is no cure for CCM, there was a certain comfort in talking through the issues and her disease progression. Although incurable (at this point), CCM also isn't life threatening so we're hoping that we're on a path to stabilizing her quality of life.

Thanks to the Mayo team and this community for their love and support. We are to head back in six months for follow-up.