(Peg and Jim Nugent at the 2013 Alzheimer's Association Advocacy Forum)
Two years ago Jim Nugent was diagnosed with Frontotemporal Degeneration (FTD), a group of disorders caused by progressive cell deterioration in the brain’s frontal lobes. While FTD was once considered rare, it now accounts for up to 10 to 15 percent of all dementia cases and 50 percent of early onset dementias. FTD causes damage to the part of the brain that controls planning and judgment, emotions, speaking and understanding speech, and certain types of movement.
For ten long years before his diagnosis, Jim’s wife, Peg, knew there was something drastically wrong with her husband. The Nugent’s nightmare began in 2001, when Jim, a successful biomedical engineer with a master’s degree, began receiving poor performance reviews at his job. Thus began a downward spiral of multiple jobs, job losses, and devastating loss of vital family income. As Jim recalls, “I finally got a job at McDonald’s. But that only lasted for three days before they had to let me go. Imagine how humiliating that was.”
But what was wrong? Doctors blamed ADHD and depression, but medication didn’t stop Jim’s frequent fender-benders or slowness at work. Jim failed to qualify for social security disability twice. His undiagnosed disease clouded his planning and judgment. Once, he simply lacked the follow through to complete the application. Peg was at the end of her rope. The couple’s marriage was on the rocks, and their finances were in shambles.
In 2011 Jim and Peg asked for some neuropsychological testing. Jim was diagnosed with FTD. The horrible diagnosis actually brought the couple some relief at last. And Social Security payments were approved within a month.
There is no cure for FTD, and Jim and Peg realize they can’t change the heartache and the losses suffered over the last 12 years. But they want to make a positive contribution to spark a long needed investment in research in hope of changing the trajectory of dementia. For that reason, they became advocates for the Alzheimer’s Association. In April, they attended the Advocacy Forum in Washington, D.C. where nearly 1000 advocates from all over the country convened to bring heightened awareness to our nation’s legislators about Alzheimer’s disease and related dementias.
“I have learned that for every $100 that is spent on Alzheimer’s research, Medicare and Medicaid spends $29,000 to care for individuals living with the disease,” said Peg. “I was shocked. I am a Medicare counselor and trainer by profession, and all I could think about was how important it is to find ways, through increased research, to prevent or cure dementia. That will have the most dramatic effect in saving Medicare and Medicaid costs than anything else I can imagine.”
Jim was a bit nervous about taking his story to the Hill, but once he got into his groove he felt more comfortable. “I let loose with my story,” said Jim. “ I was not afraid of becoming emotional. I melted some of those aids who started off like a block of ice. They softened. I felt we were really valuable.”
The Nugents plan to continue their advocacy efforts here in the State of Wisconsin. “We need more horsepower in the diagnostic end and more education of doctors so that what happened to me doesn’t happen to anyone else,” said Jim. “My disease is moving at the speed of a glacier, for which I am very grateful. That means I can be an effective advocate. I am not dead yet.”