BAUMS ON IUPUI CAMPUS
Mary Kay, Chris and Rosann at the Indiana School of Medicine on the campus of Indiana University, Purdue University at Indianapolis referred to by the locals as OO-EE-POO-EE.
Dr. Bernardino Ghetti greeted us in Indianapolis with open arms. Between 1996 and 1997 he was President of the American Association of Neuropathologists. Dr. Ghetti was leaving for a week of NIH consultation in Washington DC on Monday. So this renowned scientist asked us to join him for dinner on Sunday night, November first. Before we finished our last dinner course, I told him I had Mom's microscope slides with me. So after this magnificent dinner, he personally took us right over to his office to view them. (That's him at the right with Rosann.)
Dr. Ghetti's first impression was that the amount of tangles and plaques was lower than he would expect for the amount of time Mom's symptoms were present. The staining is quite "old school", but that is to be expected for 1995. He felt that there was an additional factor going on. That matches Dr. Brooks calling it "the Buelah Baum disease". Some of the slides looked very interesting with some "not quickly recognized" changes. He would like another opportunity to view them. In the meantime he is contacting Dr. Thomas Bird in Washington state to see if he has some blocks of tissue from our Aunt Mabel (mom's sister) that could be more effectively worked with and stained with state-of-the-art stains. We said our good-byes to Dr. Ghetti Sunday evening, knowing that he would personally follow our case. We think of him like an "uncle" who is a vital part of our team to promote the health of our future family members and ourselves.
We spent the rest of the week working with staff and Dr. Farlow. We each had a functional MRI, PET, and Lumbar Puncture, along with blood draw and a neuropsychological exam. We left copies of all our extensive records including our mother's. With the help of Francine Epperson, we drew up a family history for a Pedigree chart. They want more blood from more relatives for the DNA testing.
All in all, the week was exhausting, but exciting. We seem closer than ever to understanding what runs in our family. We most appreciate that Dr. Ghetti's program studies all neurodegenerative diseases. Too often scientists stay in their separate silos and try to fit families into the narrow categories about which they know the most. This center takes a much broader approach. This is essential for a family history as complicated as ours. We have a multiplicity of varying neurological symptoms. We are hopeful we will understand better treatment options for each of us soon.
