Tara Gottlie, whose father died six months after his ALS diagnosis, now works for the ALS Association to help others and help find a cure.
Tara Gottlieb lost her father to amyotrophic lateral sclerosis (ALS) in November, but the Massachusetts resident said she’s only just begun advocating for people with the disease and working to help find a cure.
Gottlieb remembers her father, David Gottlieb, as a generous, selfless, caring man. She and her brother, Brian, were the luckiest children alive because of how much love he showed them.
“He was just so sweet and he loved sweetness,” Tara Gottlieb, 46, said in a phone interview with ALS News Today.
When her son, Jack, was born, his grandfather quickly developed a close relationship with the boy. They wrote letters to each other and jumped on FaceTime calls. He called Jack, who is now 13, “my little buddy.”
But when David Gottlieb, then 70, woke up one morning slurring his speech, things began to change quickly. Within a month he was diagnosed with ALSand lost his ability to walk. By July he could no longer move — a disease state referred to as being “locked in.” He could see and hear, but his body was paralyzed.
A ‘different person’
His behavior also changed. He would have sudden bouts of laughter and crying, known as pseudobulbar affect, and he developed frontotemporal dementia.
“He just became a different person than the guy that we knew,” his daughter said from her home in Northampton.
Caring for a person with rapid ALS progression was like shooting at a moving target. By the time her father got a power wheelchair, he could barely move his finger, Gottlieb said. The family had a technician add a headpiece to act as a joystick for the chair, but about a week later he lost the ability to move his head.