After experiencing tingling and tightness in her left ankle, along with cramping and restlessness in her legs while sleeping, Mandy visited her doctor to figure out what was causing these issues. After rounds of tests, she was referred to a neurologist who determined she has primary lateral sclerosis (PLS), which affects her upper motor neurons.
Upon her diagnosis in the Fall of 2020, the UCSF Clinic team and the ALS Network engaged with Mandy to ensure access to vital care and support. She was matched with one of our professional Care Managers, to provide her with access to essential information and resources. The UCSF Clinic team and ALS Network also continue to monitor Mandy’s disease progression, as there are instances where PLS can turn into ALS over time.
Mandy has found the ALS Network to be an invaluable asset and said, “They guided me when I felt completely lost after my diagnosis, helping me navigate the medical system and get the care I needed. My care manager assisted with medical equipment rentals and introduced me to other people to talk to who truly ‘get it.’”
Mandy and her family are engaged with the ALS Network and participate in monthly connection groups. “These groups provide a safe and welcoming space,” said Mandy. “Most importantly, they’ve created a community of amazing people who genuinely care about each other’s well-being.”
They also have participated in our Walk & Roll to Cure ALS events. Since 2022, Team Mandy has raised awareness and become top fundraisers for the annual Central Valley Walk & Roll to Cure ALS. This important community outreach event not only provides a gathering for those affected by this disease, but raises critical funding to help people living with ALS.
Mandy deeply appreciates the care and support she has received and shares, “I, along with so many others, would be lost and suffering alone if it weren’t for the ALS Network. Their services, which are completely free, are unbelievably invaluable. They rely on donations to continue providing these crucial services to people like me and all those affected by ALS.”
We are grateful to Mandy and her incredible family for their steadfast support and commitment to the ALS Network.
We invite you to join Team Mandy, ALS Network staff, and other members of the ALS community as we gather for the Central Valley Burnout, Walk & Roll to Cure ALS in Clovis, California on September 8, 2024.