Anyone here diagnosed with PLA2G6-associated neurodegeneration (PARK14)?
I’m hoping to connect with anyone who has experience with PLA2G6-associated neurodegeneration, particularly the PARK14.
I know it’s an extremely rare condition, so even a few responses would help. Mainly I’d love to hear what has actually worked for you or your family member:
Which medications have helped with symptoms, and which didn’t? (e.g. levodopa response, dystonia treatments)
Any physical therapy, occupational therapy, or exercise approaches that made a real difference?
Day-to-day strategies for managing mobility, balance, or other challenges
Specialists or movement disorder centers you’d recommend
Anything you wish you’d known or started sooner
Honest experiences — what helped, what didn’t, what surprised you — are exactly what I’m looking for. Thank you so much for sharing.