This 2014 TED student talk by Kenneth Shinozuka is inspiring. Please take the 10 minutes to listen--there is something here that continues to resonate with me since the day my father was first diagnosed with Alzheimer's disease.
We can either create a solution to a problem that hasn't been clearly confirmed or articulated--pharmacological interventions for a diffuse clinical syndrome or a specific pathologic target? Or we can create solutions that will improve the lives of millions of caregivers and patients now. I also intend to flex my "research" muscle and look to global societal patterns of care for the elderly--especially dementia and Alzheimer's disease. Kenneth has what appears to be a traditional Japanese family living under one roof with elder care likely to be the primary responsibility of multi-generational family members. |
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National Public Radio better known by it's tag, NPR has a powerful series, Inside Alzheimer's NPR. Greg O'Brien, a journalist, has early onset Alzheimer's disease and opened his journey for you to follow a family negotiating daily life 5 years post diagnosis.
An important clarification he makes is that the diagnosis can be followed by a lot of living. What we need to do is remember the humanity and empower the individual to find resources and technologic advances. The fractured nature of his reality is chilling and informative. "A fish rots from the head down" he states...
Many of these observations are specific to the mind of a writer and journalist likely unique to early onset Alzheimer's in absence of collateral senescence. It leaves me keenly aware that I have no recollection of asking my father any specifics of what he experienced. My time with him was usually focused on caring and mimicking normal life activities. I had never thought about interviewing my father. I guess in the face of considering the ultimate outcome I needed him to just be dad...
Greg O'Brien's story is told in his memoir, On Pluto: Inside the Mind of Alzheimer " a book about living with Alzheimer’s, not dying with it. It is a book about hope, faith, and humor—a prescription far more powerful than the conventional medication available today to fight this disease. |