HD Insights™

Vol. 5 - Fall 2013

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H D I N S I G H T S Osorio, cont... Adjusting to life in a family with HD was ultimately possible, but by no means easy. Coping with HD required fundamental psychological changes in both himself and his children. For Rodrigo, accepting its challenges changed his perspective. "I think that when one confronts these difficult situations, no matter the cause, one savors and appreciates the moments of happiness and periods of peace and tranquility much more. Above all I am more connected with the present." As Rodrigo states, living with a family member who has HD requires "constantly making an effort to live positively and connect with the patient in all possible ways." As coping with the difficulties and changes brought on by HD requires the participation of all members of the family, family unity becomes extremely important. For this reason, Rodrigo was motivated by a family member to go beyond accepting HD, and start taking action. He explains, "When one of my children decided to take the test that was a turnaround moment for me. It was in that moment that I really decided to deal with this letter that I had received." Rodrigo has since been actively involved in improving the lives of people affected by HD in Chile. Months after first learning about HD, he founded the Agrupación Coping with HD also requires the shifting Chilena de Huntington of family roles, as family members must (www.huntington.cl), a network of HD compensate for the patient. Rodrigo patients and families. He describes the describes such changes in his family. "My process of turning his emotions into kids went from being cared for by their action. "One of the ways of fighting the mother to taking care of her. I had to be disease was to gather knowledge and both mother and father at the same time." help for other families confronting the Nevertheless, Rodrigo's family was disease and for families with the united in the same challenges and goals possibility of facing it in their future. This throughout their struggle with HD. He gave motivation for a group of families to explains, "There is a long process within get together and start the Agrupación." the family that starts with accepting the diagnosis together, fighting it together, After founding the Agrupación, Rodrigo and later caring for the patient together." coordinated a center for clinical research and obtained accreditation by the Huntington Study Group. Rodrigo and his colleagues took further action in creating the "Hogar" (Spanish for "home"), a center for families and patients with HD and other neurodegenerative diseases to provide relief from some of the challenges in living with these conditions. Rodrigo explains, "The Hogar provides a program that is personalized using occupational, physical, cognitive, and emotional therapy." As exemplified by his achievements, Rodrigo was able to channel his energy in a positive way to improve the lives of many people in the HD community. He talks about how the difficulties of living with a person with HD influenced his values and actions. "No one changes their priorities in life, for better or worse, when they are completely happy. Facing this challenge with little hope on the horizon, I decided to change my priorities. I decided it was the time to give back to society. For me, doing something real and effective to help others, in collaboration with family and friends, allowed me to be not part of the problem, but instead to be part of the solution." Meet the Investigator VITAL SIGNS NAME: Kenneth Marek, MD CURRENT POSITION: President and Senior Scientist of the Institute for Neurodegenerative Disorders, New Haven, CT OTHER POSITIONS: CEO of Molecular NeuroImaging, LLC; Member, Scientific Advisory Board, Michael J. Fox Foundation EDUCATION: AB in Biochemistry, Princeton University, Princeton, NJ; MD, Yale University School of Medicine, New Haven, CT Dr. Kenneth Marek HOBBIES: Cycling, relaxing and enjoying Cape Cod, particularly the smoked salmon! 2 Copyright © Huntington Study Group 2013. All rights reserved. HD Insights, Vol. 5

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