A Quiet Crusader | Medical | Hudson Valley | Hudson Valley; Chronogram
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A Quiet Crusader 

Always a fighter for the people, Maurice Hinchey now battles a rare brain disease.

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The Challenges of Long-Term Care

Watching a loved one suffer is painful for anyone, and talking about the effects of FTD on a man of such public stature is not easy for Hinchey's family. Yet his wife and children have decided to speak out, fueled by the hope that his story will help others. "We wanted to share with people his journey, his fight, and what he's been going through because he is so beloved; he is a man of the people," says the former congressman's daughter, Michelle Hinchey. With affordable healthcare for Americans in peril earlier this summer, the timing to make a public announcement seemed right. "Unfortunately, people facing the most debilitating diseases and needing long-term care like my father are the ones on the front lines of this much larger fight. It's not fair to them or their families."

Hinchey's family feels very fortunate that he can remain at his home in Saugerties—overlooking the Hudson Valley landscape that he worked throughout his career to protect—and receive care from a dedicated team of experienced caregivers, as well as family members. With gratitude for the support they have found, the Hincheys know it can be even harder for many others facing similar predicaments. "A long-term condition like this is going to cost most families more than they can afford," says Marder Hinchey. "It's easy to exhaust lifelong savings. Some people mortgage their homes to cover the cost of long-term healthcare. Many families feel they have no other choice but to divest their assets to get on Medicaid, which is the only public program that covers long-term care, whether it's in a nursing facility or at home. Some people have to choose between educating their college-bound children or paying for the healthcare of another family member. It's heartbreaking."

With a generation of baby boomers entering their golden years and falling prey to more chronic diseases, we could hear many more horror stories like these—especially if lawmakers succeed in making cuts to Medicaid or putting caps on treatments, as some have tried to do. "We should be doing everything we can to look out for the people who need the most assistance when faced with conditions like these," says Michelle Hinchey, whose father proudly voted in favor of the Affordable Care Act—seeing it as an incremental step toward the larger goal of universal healthcare. "My father believes that access to healthcare is a basic human right, and that universal healthcare is something we should absolutely be striving for as a country. We are behind so many other nations in that fight."

A Little-Known Brain Disorder

The Alzheimer's epidemic is already putting an enormous financial burden on our healthcare system, and a tremendous emotional strain on patients and their families. Yet in some ways, the emotional burden on people with rare diseases like FTD is even greater because of the isolation they feel, and the lack of understanding by the general public. "We need a broader understanding that not all dementia is Alzheimer's," says Dickinson. "It's not always a memory disorder, and it isn't always limited to senior citizens."

Since FTD can cause so many different and seemingly unrelated kinds of symptoms, it's a tough disease to pinpoint. While Hinchey mainly faces language and movement difficulties, other FTD patients may experience changes to their personality, behaving in ways their family doesn't recognize. "The frontal lobe controls executive function, personality, behavior, our social filter," says Dickinson. This is the part of the brain that tells us it's not okay to steal a muffin from the convenience store, or that stops us from telling the neighbor that she's wearing an ugly dress. People with the frontal variant of FTD have lost that social filter. In patients like these, the road to an accurate diagnosis is even more difficult.

"On average, people go 3.6 years before they get a diagnosis of FTD," says Dickinson. "Most of them have gone to a series of different physicians—GP, neurologist, psychiatrist—and gotten misdiagnosed. They're told that everybody forgets words, or everybody makes inappropriate choices at times. Maybe it's a midlife crisis. Why did he go out and spend the kids' college fund on a new Porsche? You don't necessarily think, 'Well, he's got a brain disease.' People often get misdiagnosed with depression, bipolar, Alzheimer's, or a movement disorder. It really complicates the journey for these families."

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