U.S. Army veteran Ken Keene Sr.’s brain is slowly deteriorating from frontotemporal lobe dementia, and his son is coping with their family’s loss and documenting his father’s story on their YouTube channel, The Journey with ToughKenaMan.
Ken Keene Sr. was diagnosed with frontotemporal lobe dementia in 2014, but his symptoms started much earlier.
Ken Keene Jr. began documenting his father’s progress this past summer with his cell phone. The videos are “an attempt to document Keene Sr.’s dementia and let others see firsthand what it’s like to be around someone with the disease,” Ken Keene Jr. told the Philadelphia Inquirer.
“I feel like I’m signing off on his life,” Ken Keene Jr. said.
During frontotemporal lobe dementia, the frontal lobes of the brain begin to shrink causing symptoms such as impulsiveness, inappropriate social behavior, inability to concentrate or plan, difficulty with speech and many others.
The project’s title, The Journey with ToughKenaMan, references a name Ken Keene Sr. gave himself after seeing a sign for Toughkenamon, Pennsylvania.
As a result of his disease, Ken Keene Sr. now dances, talks and hugs more frequently than he used to. He also recently moved to the Delaware Valley Veterans Home in northeast Philadelphia because his wife, Linda Keene, could no longer care for him by herself.
The YouTube videos posted by Ken Keene Jr. share many aspects of Ken Keene Sr.’s life and current state — from reactions to the front page news to doing household chores, to emergency trips to the hospital.
Ken Keene Jr., an Air Force veteran and personal trainer, told the Philadelphia Inquirer that he spends three to five hours per week with his father, documenting his current state.
Linda Keene was unsure about sharing her husband’s story online at first, but she has since changed her mind and found value in the project.
“It makes me feel good because I have a piece of him,” she said.
“I believe we are finding the person he was for many years, that he suppressed,” Ken Keene Jr. said, according to the Philadelphia Inquirer.
“He wanted to dance. He wanted to be outgoing,” he added.