US - INDIA GLOBAL REVIEW

eases. He recently led a team that integrated genetic information into a score for predicting the age of onset of Alzheimer's. The approach, which utilized informa- tion from more than 70,000 peo- ple, may help scientists design future clinical trials. And as part of the ALS genet- ics study, Desikan and Karch used data from more than 120,000 people to show that the disease is related to a rare disor- der called frontotemporal demen- tia but not to Alzheimer's or Parkinson's. He plans to keep going. "My intuition tells me that my time has not come, the same way I knew about my diagnosis," he types. "But I could be wrong." The mainstay in Desikan's world is his wife, Maya Vijayaraghavan, a petite woman with a no-nonsense manner. The two started dating in Boston when she was a fourth-year medical student. "He talked all the time," she remembers. "He was the life of the party. Everyone wanted to be his best friend." Like Desikan, Vijayaraghavan had come to the United States from India when she was young. On their first date, the two real- ized that they both carried the same picture in their wallets - of Uppiliappan, an incarnation of the Hindu god Vishnu. And both sets of their parents had been married in the same Indian temple, which is dedicated to Uppiliappan. "When we pulled out the same photo I knew we would be mar- ried, and I told her," Desikan types. Their 2008 wedding festivities, at the same ancient temple, involved 80 friends and relatives and went on for days. "We were in love," he types, a smile lighting up his face. The couple had one son, then another. The younger was 6 months old when ALS entered their lives. "The bomb that went off in our household," Vijayaraghavan calls it. She's determined to give their children happy memories even amid the most challenging of cir- cumstances. "It is their childhood," she says. "She is my rock," Desikan types. She is also something of an organizational and logistical wiz- ard. Desikan is 6-foot-1 and more than 230 pounds. Moving him from his bed or wheelchair is its own undertaking, and leaving the house is a daunting task. Their support team includes two full- time caregivers during the day. Her father and his parents come every week to help, and his sister is a frequent visitor. They get Desikan out as often as possible - to the park, a coffee shop, a movie. The family recently went to a beach near the Golden Gate Bridge, where the boys played in the sand and their father reveled in the sun on his face. "It was so nice to smell the sea and sand," he types. One friend from New York moved his wedding to San Francisco so Desikan could attend. "It's been a major outpouring of love in so many ways," Vijayaraghavan said. "We can never reciprocate. We don't even have time to acknowledge it." But they try. In December, Desikan invited his entire department to a holiday party at his home and used his computer setup to serve as the DJ. He threw another big celebra- tion Saturday for his 40th birthday. Still, the once-gregarious researcher sometimes feels trapped and often lonely, and he admits to dark moments. His weakening neck muscles are making it harder for him to keep his head up. He compares himself to the Minotaur in writer Jorge Luis Borges' fantasy novel "The House of Asterion." "I live a solitary existence," Desikan allows. Most painful is what he misses with his older son, now 4. "We were so close," he types. "I wish so much that I could hold him in my arms." Desikan keeps typing, though. Despite losing "so much," he describes himself as "blessed." "In some twisted way," he writes, "ALS has made me free and realize what my life and who I am - a human being that has given and received love to his family and friends. 34 US-INDIA GLOBAL REVIEW JULY-SEPTEMBER 2018 Rahul Desikan and Maya Vijayaraghavan in a photo from a few years ago. Desikan is no longer able to walk or use his arms. Photo courtesy of Rahul Desikan and Maya Vijayaraghavan Laurie McGinley | The Washington Post

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