Optimistically, we hoped Biogen's drug had turned back Don's clock.  Unfortunately, by June 2020, he had missed six infusions and regressed 20-25%.  At this time, Biogen granted him single-patient expanded use. Little did we know it would take until October 2020 for him to get his next dose.  Regulatory papers had to be filed between Biogen, UCLA, and the FDA, which took several months.

 

During this time, Don lost his strength and muscle coordination and rapidly lost his ability to balance.  He was in a lot of pain and spent most days in bed.  I was worried he would die before the infusions started.