A diagnosis of frontotemporal degeneration is frightening, and full of the unknown. At this year’s conference, Gary and Lisa Radin told the story of their journey with FTD with hope, inspiration, and grace.
Crisis. Courage. Resolve.
Lisa and Gary are a mother-son duo who have written the book on FTD, so to speak. They delivered the keynote presentation at the 2016 FTD Caregiver Conference to a full auditorium and shared their deeply personal journey with FTD. In 1995 Lisa began to notice changes her husband’s behavior. Lisa and Neil had been business partners for over 10 years and suddenly he began to have difficulty keeping up with his work. He seemed less motivated to keep things running. This was not the man she married. She also started to notice his speech patterns had changed; he had a tendency to slur his words. This sent up red flags and Lisa pushed to have her husband evaluated by a neurologist. After seeing various doctors and being diagnosed with everything from depression to a mid life crisis, Lisa was finally told that her husband had FTD. They had never heard of FTD before, but knew it wasn’t good. Initially, she felt fear. Fear of how she was going to care for him. Fear of who he was going to become. She felt disappointed that she would not grow old with her husband as they had talked about for so many years.
When she broke the news to the rest of the family, they were devastated. Gary spoke about how the family entered ‘Crisis Mode’. They scoured books and the internet for information about the road they were about to go down. Unfortunately, at that time, there was not much information available on the subject and the Radins felt alone. As they searched for information and possible treatments, they began to come to terms with the journey they were on and they began to adapt. Gary moved in with his parents to help care for his father. The family became a cohesive unit, caring for their father and husband, as well as each other. Eventually, they found courage in taking control of the situation as best as they could. They created a care team consisting of healthcare professionals and family members whom they trusted to make decisions in their best interest. They ensured each member of the care team was on the same page in terms of quality of life, long term care, and treatment plans. They emphasized the importance of planning as a team, not as an individual. They also learned to advocate for Neil. Even as Neil’s ability to communicate was declining, they fought to provide the therapies and treatments they felt provided the best quality of life. They encourage all family members to be active in treatment options while keeping their loved one’s wishes in mind.
Eventually, the Radins not only found courage to continue, but found positives in everyday life. They learned to enjoy the small things and to live in the moment. Gary assured the crowd that they laugh often and hard, and he reminded us that a sense of humor is important and to take every day one at a time. Despite becoming, seemingly, weaker with the Neil’s illness, the Radins grew stronger. They found resolve and have learned to live with the new normal that is their lives.
Since the Neil’s passing in 1998, the Radins have become strong advocates for those on their own personal journey with FTD. They continue to provide outreach and motivational speaking services for affected by FTD.Lisa and Gary Radin are the editors of the first comprehensive guide to living with frontotemporal degeneration on the subject entitled “What If It’s Not Alzheimer’s?”. Now in its 3rd Edition, this book contains chapters by the Penn FTD Center’s Murray Grossman, MD, EdD, Elisabeth McCarty Wood, MS, David Irwin, MD and Lauren Massimo, PhD, CRNP as well as a chapter by Conference Speaker Paul L. Feldman, Esquire.
You can watch the Radin’s full Keynote Presentation on the Penn FTD Center Website by clicking Crisis. Courage. Resolve.