AFTD Ambassador Deb Scharper shared the difficulties that she faced trying to get an accurate FTD diagnosis for her husband in a story published by The Healthy.  

Scharper’s husband, Tommy, was an auto mechanic running a successful repair shop prior to his diagnosis.  

In 2008, Tommy’s behavior started to change; he lost interest in lifelong passions, picked up entirely new hobbies, spent less time with his family, and developed compulsive behaviors. Scharper notes that his personality changed as well, with Tommy becoming paranoid or deeply depressed at times.  

“Then one day in 2010, I found him staring under the hood of a client’s car with a panicked expression,” Scharper said. “’I don’t know what to do here,’ he whispered. That was when I knew something was seriously wrong. He used to be known as the best mechanic in our town. To be confused simply by looking under a hood? That wasn’t Tommy.” 

Scharper says that Tommy was initially misdiagnosed with depression, possible schizophrenia, and possible bipolar disorder. Medication helped somewhat, but symptoms would continually return.  

“Then, in 2012, he had a devastating mental breakdown where he attempted to hurt himself, the children and me. This was way beyond my ability to handle. I took him to a psychiatric facility where he stayed for two months,” Scharper said.  

After taking Tommy back to the psychiatric facility for a second time years later, Scharper says that through her own research, she finally found a condition that matched all of his symptoms: FTD. After being screened by a neurologist, including tests to exclude other disorders, Tommy received an official FTD diagnosis.  

“We learned there is a genetic link between ALS and FTD—in fact, my father-in-law’s recent passing from ALS became an important key to unlocking Tommy’s correct diagnosis,” said Scharper.  

Scharper became Tommy’s legal guardian after his diagnosis. Following a difficult search, she found a long-term care facility for Tommy.  

“So, my advice? Trust your gut,” Scharper said. “You know your loved one best—so if a diagnosis feels wrong, keep trying until you get answers.” 

Symptoms can vary based on which FTD disorder an individual may have. Visit AFTD’s page on the different types of FTD disorders for more information on what to look for. If you’re concerned you or someone else may be showing symptoms, or need help finding a diagnosis, contact the AFTD HelpLine at 1-866-507-7222 or info@theaftd.org.