Spotlight on… Steve Perlis, AFTD Persons with FTD Advisory Council

Steve Perlis

In 2018, Steve Perlis talked himself out of being a spokesperson for persons diagnosed with FTD, reluctant to be considered the “poster child” of the disease. Now, three years later, Perlis proudly serves as the newest member of AFTD’s Persons with FTD Advisory Council, amplifying his voice in service of others living with FTD.  

I was scared to tell my story. I felt that I would be rejected by anyone that heard the story and that it would come back and even hurt my family. I know it affected the success of my business, and I feared it was going to affect my life and the lives of those around me,” Perlis said.  

But Perlis, 72, has found that sharing his FTD journey with the world has helped him feel connected to the person he was before being impacted by the disease.  

A lot of times people like me get trivialized and marginalized,” he shared. “I was very prominent at one timeI had people who depended on me and colleagues around the country. Now, I [can] take the passion that I have for helping people and the technical expertise that I developed over a period of time and do something good for other people.” 

Life with bvFTD 

Perlis, a retired Navy lieutenant commander, is living with behavioral variant FTD (bvFTD). Before experiencing bvFTD symptoms — he was diagnosed in 2010Perlis committed his life in service to his country and people in need. After his time in the military, he opened a private law practice, providing counselling, planning, and document preparation for disabled persons. In 2008, Perlis started to take notice of his increased feelings of anxiety and crippling bouts of depression.  

“I was being more emotional and more depressed. I was afraid to get on a plane, afraid for the sun to come up, afraid to talk to people, and I tried to fight through it,” Perlis recalled. “I was popping [a lot of] Xanax because I could feel the grip of losing my ability to communicate with people. Faith in myself got me through most of it, but unfortunately not all of it.” 

By 2010, Perlis was forced to shutter his law practice. “I was losing confidence and it just became impossible to continue with the practice. It was humiliating, it was scary.” 

Perlis shared that the loss of his ability to communicate left him terrified. As a result, he oftentimes experienced manic outbursts and his depression caused him to have suicidal ideations that led to several attempts at taking his own life 

My moods were swinging wildly all over the place. I tried to disappear and acted it out three times, but it never actually happened. Deep down inside I wanted to live; I just didn’t like who I’d become or how it felt,” Perlis said.  

A Soldier’s Journey Towards Healing 

The former Navy lieutenant began to isolate himself, exacerbating his symptoms even more. With the help of his family, Perlis began taking part in support groups for men, which opened him up to the power of sharing his story and connecting with others in similar circumstances. In 2018, Perlis forged a stronger connection with AFTD when he attended that year’s AFTD Education Conference in Chicago. With encouragement from other members of the AFTD Persons with FTD Advisory Council, Perlis has become more active in FTD advocacy and awareness efforts.  

I feel like I’ve found a home. These are not just colleagues — these are friends. These are fellow travelers along the road to make life better for people like myself, the wounded warriors with FTD,” said Perlis.  

He and the other members of the Advisory Council will take part in AFTD’s 2021 Education Conference, happening virtually May 13 and May 14. The group tell their stories of living with FTD during the session “Our Voice: A Discussion with People with FTD.”  The session marks the first time that the Council will be part of AFTD’s Annual Education Conference since they were officially chartered in mid-2020 

The telling of [our] story is a good starting point for raising the hopes and resurrecting the dreams that people like myself have for being useful, productive, and relevant in today’s world,” Perlis mentioned.  

For more information on AFTD’s 2021 Education Conference, visit the conference homepage here     

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