Medical Mystery #2: Dad’s Decline
After Mom’s death, Dad was in his 60’s living alone. He didn’t do well. He was barely able to walk from his bedroom to the living room. He tripped and fell repeatedly and shuffled his feet with each step. Despite having had prostate surgery, he had bladder accidents every day. Although he slept 6-8 hours at night, he napped multiple times between breakfast and dinner.
No one offered the right diagnosis. The clues were there, however. A-P-B-D.
• A – Ashkenazi Jewish descent; Age 40-60
• P – Peripheral neuropathy (numbness, weakness, or tingling in the toes, fingers,
hands, and/or feet)
• B – Bathroom frequency beyond the norm, or difficulty with bladder control
• D – Diminished energy
When Dad died, I needed to know the answer to my parents’ mystery ailments. Although Jewish tradition prohibits autopsies, I requested one.
Over two months went by. Then, a pathologist at the Oregon Health Sciences University called with his findings. He had discovered microscopic particles in nerve cells throughout Dad’s body. He called them polyglucosan bodies. He said Dad had a very rare disease called Adult Polyglucosan Body Disease (APBD). It was 1991, and the cause was unknown.
In my next blog I’ll describe yet another family mystery.
Meanwhile, if you believe you have the A-P-B-D indicators, a simple saliva test now settles the question. Write to info@apbdrf.org to arrange for a test kit to be sent to your home. And if you have APBD, know that the APBD Research Foundation is hard at work to get to a cure. You can help us move forward, too. Everyone who gets diagnosed should click on the red button at the top of our homepage, www.www.apbdrf.org, to sign up with the Patient Registry. Also on our homepage, you, your family, friends and colleagues will see an orange button that helps process a donation towards research expenses.