A Family’s Harrowing FTD Journey. How Barrow Helped Them Find Hope
Robert Knight and Wendy Knight were married on a sunny spring day in 1993. The years that followed were filled with laughter and love as they welcomed two daughters and filled their time with birthday parties, barbeques, and family vacations. They planned for a long, happy future together, but little did they know, their journey would take a drastic detour.
“It was 2008, and Rob was only 44, when I first started noticing a shift in his behavior,” says Wendy. “He would act out and then pull it together, so I thought it was just stress.” However, over the next several years, Rob’s behavior became increasingly erratic. It started to take a toll on the whole family.
By 2016, their life together had completely deteriorated. Rob had left home and hardly contacted his family. Meanwhile, Wendy and her youngest daughter moved in with her parents while her oldest daughter was away at college. Rob’s erratic behavior eventually escalated to the point that he ended up living on the streets, disheveled, disoriented, and a shell of the man who once had so much life in him. “Something was definitely wrong. I knew it wasn’t drugs or alcohol, but I didn’t know what is was or what to do about it. I felt hopeless,” says Wendy. After over a year of living on the streets, a policeman found Rob and was able to get him a psychological evaluation. That’s what finally brought Rob home and started a long, harrowing journey to a diagnosis.
Ten hospital visits and over six different facility stays later, Wendy and Rob came to the Alzheimer’s and Memory Disorders Program at Barrow Neurological Institute.
Here, the world-class physicians were able to give the Knights what no one else could in the 11 years since Rob started exhibiting symptoms: a diagnosis. In 2019, Rob was officially diagnosed with frontotemporal degeneration (FTD), a disease that literally shrinks the frontal and temporal lobes of the brain, causing dramatic changes in behavior, language, and speech. FTD is a rare form of dementia, with only 60,000 cases in the U.S., and is often misdiagnosed as a psychiatric disorder. There is no cure for FTD, and at Rob’s advanced stage, he was given only six to twelve months to live.
Thankfully, Rob is still here today. He is now 57 years old and lives in a nursing home. He can no longer walk or talk, but he is comfortable. “With FTD, it’s an ambiguous loss. The Rob I once knew was gone a long time ago, but he is still physically here, only he’s like a shell of his former self,” says Wendy. “We just try to relish the good moments because we know we are on borrowed time. ” Although FTD is untreatable, the team at the Barrow Alzheimer’s and Memory Disorders Program didn’t abandon the family in the often experienced “diagnosis and adios” approach. They continued to provide real care and support. Wendy shares, “What I really like about Barrow is that even when we got Rob situated at a good place, they still cared about our family and how we were doing. It made a huge difference for myself and the girls.” She says that when she first started attending the monthly FTD support group at Barrow, it felt like coming home. Now, she sends them weekly pictures and updates on Rob, and no matter how big or small the accomplishment, they are always invested.
“When I look into Rob’s eyes or see him with our daughters, the love is clear. I know he’s still somewhere in there and still wants to be a part of life. I think caregiving plays a major role in that, and Barrow knows it. Everything they do for FTD gives me so much hope for this disease that normally doesn’t get much recognition or support,” says Wendy.
Barrow researchers are working hard to find treatments and cures for devastating diseases like FTD. In honor of Rob and all those with similar conditions, please make your tax-deductible donation to support the groundbreaking FTD, dementia, and Alzheimer’s disease research programs at Barrow. A generous donor has offered to match each donation made to this research, up to $350,000. Donate now to double your impact.