My relationship with my father became strained over the next few years. He was frustrated by how APBD was robbing him and this impacted me and my mother as well. My mother, Phyllis, was a pillar of strength for my dad and for me.
I remember how my dad would hold on to my shoulder to stabilize himself when walking and how he needed me to walk with him to the synagogue even though it was only a short block away from home because he was afraid of falling. It was hard for me to accept that we couldn’t go to a museum, take a daytrip, or go out for dinner anymore.
In January 2005 — at the suggestion of my dad’s neurologist Dr. Edwin Kolodny – we went to Israel to meet with Dr. Alexander Lossos at Hadassah Hospital. Dr. Lossos had discovered, back in 1991, that low activity of glycogen branching enzyme was the cause of APBD. I remember Dr. Lossos being younger than we expected. He was attentive and caring, and he listened closely to my parents as they shared the symptoms and asked questions. He addressed their questions and explained that one big problem with APBD was the lack of physician awareness, and another problem was the lack of research because there was a lack of funding.
My father remained in contact with Dr. Lossos after we came home. With guidance from Dr. Kolodny – and with his brothers Michael and Emil – he began the work of setting up the Adult Polyglucosan Body Disease Research Foundation. My father had a mission: to ensure that no one else would have to suffer the way he did, and that the Foundation would find a treatment and a cure for this terrible disease.
In 2007, the APBD Research Foundation participated in the American Academy of Neurology’s annual conference in Boston, Massachusetts. Over the course of the two-day event, we were shocked. One after another, doctors would stop at our table and stare at us blankly when they heard “APBD.”
I wondered, “How could we hope my father would get better, that any of these doctors would be able to help him, when we knew more about APBD than they did?” We knew that we had to press forward. My father devoted his life to the Foundation, speaking with other patients, meeting with doctors and researchers … doing anything he could to spread awareness of this little-known disease that was now ravaging most of his body.
I was 27 when I married Mark Rosenberg. Mark and I were set up by a family friend. We became fond of each other quickly. It took some time for my dad and Mark to build their relationship and accept that we were going to get married. I don’t recall talking with my dad about marriage in general; I often wish that I had. A few weeks ago, I overheard Mark share with a friend that my father was the type of father-in-law any son-in-law would be lucky to have. It made my day. I was reminded, too, of my dad’s funeral service, where Mark was unable to complete his eulogy because he was overwhelmed by his loss.