Patient Corner

In this section you will find personal accounts of people affected by APBD. The APBDRF as a patient support group does not endorse any health practitioners, therapies, medicines, etc.

While researchers chip away at finding the cause and cure for APBD, patients, partners, and care givers seek work-arounds for disease symptoms. “Tribe” members are constantly on the lookout for tips and ideas to help blunt their challenges. Visit, to see what we have to share.

Thanks to the work of David Epstein, our organization has been included in the Resource Central Section of Neurology Now magazine. You can read it online here, and order a FREE subscription to the magazine as well.

A patient recently found a normal-looking pair of athletic pants(summer and winter weights) that have made it easier to use a catheter while seated in a wheelchair.  They zip on both sides, creating a fold-down flap

Better Branches: Alma Hecht’s personal blog about living with APBD

The Story of an APBD Patient by Phillip Adiv

Opening reception of Robert G. Zuckerman’s KINDSIGHT(r) at the 92nd Street Y in New York.

Photo Album of APBD/KINDSIGHT(r) pieces