My Beautiful Wife and VCP disease (FTD)
Updated: 6 days ago
Lovingly told by her devoted husband, Jerry B.
Maria de los Angeles (Angie) C.B. was born in El Paso, Texas, in 1943. At the time of her birth, her father, a US Army Private, had just been captured by the German Army on Sicily. He was transported as a prisoner of war to Germany (East Prussia), where he remained until the war's end.
I am Jerry B., Angie's husband and her primary caregiver. This is my account of her incredible life. Following graduation from Hotel Dieu School of Nursing in El Paso, she was commissioned as a lieutenant in the US Air Force and she advanced to flight nurse status during the Vietnam war. She volunteered for service in Vietnam, but was assigned to Ramey USAF Hospital in Puerto Rico instead, probably because she spoke fluent Spanish. At the time of her separation from service, she had risen to the rank of captain. Her civilian career as a critical care nurse began at Stanford University in Palo Alto, CA and subsequently she moved home to El Paso. She owned a 1975 International Scout II (4 X 4 SUV) and took great pleasure transporting her fellow nurse friends on winter ski trips to the mountains in Southern New Mexico. We met while we both were working at William Beaumont Army Medical Center in El Paso. After we married we set up housekeeping in California, where I had been posted by the US Army. In San Francisco and while undergoing chemotherapy for breast cancer after a radical mastectomy and more irradiation therapy from just before we were married, Angie continued her nursing studies and graduated from Sonoma State University in Northern CA with a BSN degree. I was assigned to Letterman Army Medical Center, Presidio of San Francisco and we were living in military housing near the Golden Gate Bridge. I left the Army for the first time in 1989 for work in Tennessee, near my childhood home. Angie spent lots of time tenderly and lovingly caring for my aging parents in subsequent years. Angie was always game for adventure. In 1999, we traveled to Syria. We crossed the Tigris River at the border of Syria and Iraq about 45 miles north of Nineveh heading east for Kurdistan. Angie and I were on our own for this journey. The small boat we took across the Tigris was powered by a 20 horsepower Suzuki outboard motor with an able Kurdish man at the tiller. This was a really high adventure for us since Saddam still ruled most of Iraq, including Mosul and Nineveh. I had volunteered to lecture in two of the three medical schools in Iraqi Kurdistan and our visit lasted about 3 weeks. Beginning in 1993, she traveled on short term mission trips to Mexico on more than 30 occasions, usually as part of a team that served the poor near Mexico City and later in Oaxaca state, in and around the town of Juxtlahuaca through the outreach our church and a local Mexican church supported by missionary family friends. In 2010, when I retired from the US Army after a second (6 year) tour of Active Duty, Angie and I decided to volunteer as high school teachers at the Classical School of the Medes in Sulaymaniyah, a K-12 school located in the Kurdish region of Northern Iraq. Angie's role during the 2011-2012 school year was as the school nurse and journalism teacher. She was voted favorite teacher that year. For several years after our return home, she would proudly recite from memory the names of her 41 journalism students. In 2014 Angie's VCP Disease first reared its head, presenting as quirky behaviors. She began to obsess with her weight, which was normal, but she lost about 30 pounds of body weight, down to 99 pounds, simply by dramatically reducing her food intake. I had gifted her a "smart" phone for her birthday, but she wasn't able to master its functions. She could not locate the address book from the menu and she searched for movable keys to press on the keyboard screen. After his evaluation, a psychiatrist friend presumed she was experiencing early Alzheimer's disease. His work-up included consulting a clinical psychologist for neuropsychiatric testing. She did not react well to the medicine Aricept, a drug often given for such conditions. In fact, she experienced severe mania that necessitated quetiapine, an antipsychotic drug, for treatment. She was hospitalized for five days during this period to stabilize her mental condition. In early 2016 we first learned about VCP Disease from one of Angie's eight younger brothers who was being evaluated for possible ALS at the University of Colorado. His evaluation necessitated a muscle biopsy which showed inclusion bodies, suggesting VCP Disease and his genetic testing was confirmatory. Angie's mother, aunt, and older sister has already passed from dementia. We now assume they were affected by VCP Disease. Angie's genetic testing also confirmed VCP disease. In July 2015, we enjoyed our last medical mission trip with a team from Belmont Church to Oaxaca. Our last vacation took place in late 2015 when visited our former students and their parents during an enjoyable 15-day stay in Iraqi Kurdistan. Since early 2016, Angie's frontotemporal dementia (FTD) attributed to her VCP Disease has slowly but steadily advanced. Today, Angie's FTD is in a late stage. The essence of who she was has long departed. She has lost all memories, both short- and long-term. Angie is unable to speak more than the occasional word or two. She seems incapable of understanding most of what is said to her, even the most basic directions or simple requests. She sits in silence in no apparent distress with complete detachment from me and other visiting family and friends. Her personality has completely faded. Her affect is flat. She doesn't like to have her "space" invaded, and she sees the approach of any helping hand as an intrusion. She makes this strange "cackling" sounds like she is being threatened. However, Angie retains the fantastic ability to sing-along to the words of familiar songs, especially Christmas carols. Thank you, Joan Baez, for your 1966 Christmas album, NOEL, that Angie especially enjoys. From its onset, Angie has no apparent awareness of the disease affecting her so terribly. Presently, she seems to experience little joy, and there are no spontaneous smiles in a lady who, once, was all smiles. Angie usually has a blank stare that hardly changes and if she views TV, she shows no reaction to any program airing. A few years back, Angie tended to wander-off. Currently, she hardly moves from her chair. Her appetite is good as is her overall health. We take frequent walks around our driveway to preserve her mobility. We have "close combat" at shower time, and when it comes time to tidy up after trips to the bathroom. She wears adult diapers. Manicures and pedicures are impossible. Angie has no interest in grooming, and she can hit or bite when I get close, invading her space, but I am good at dodging. I was a nursing aide the year before I enrolled in medical school. Taking care of Angie is akin to that work. The tasks are not strenuous but require constant attention. I am content to care for her in our home for now. VCP Disease has not diminished Angie's beauty. Her next birthday is May 25 and she is as beautiful as ever. She is also a 42 year breast cancer survivor, a cancer induced by heavy irradiation treatments to her right chest which she received for inexplicable reasons when she was just one year old and her dad was a prisoner of war.