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Dementia need not rob patient of dignity

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Saturday, April 14, 2012

Every morning, Aida Spino wakes her husband of 45 years, gets him out of bed at their Greensburg home and dresses him in clean clothes.

She prepares breakfast and they sit at their kitchen table, where she feeds him with a spoon so he won't spill yogurt on his shirt. She takes him out for a walk to get fresh air and to talk to the birds.

For eight years, Alzheimer's disease has sidelined Dr. Pascal "Pat" Spino, 89. His 80-year-old wife is trying hard to make sure the terrible journey that is Alzheimer's doesn't steal his dignity along with his mind.

"He's going to stay alive and live with dignity until the bell rings from above," she told me.

The Spinos are known all over this Westmoreland County city, where the pediatrician practiced from the mid-'60s until 2008. Dr. Spino was the go-to doctor for ear infections, sore throats and routine check-ups and once saw 50 patients a day.

"I never thought when we got married and we were on top of the world (that) this was going to happen," Mrs. Spino said.

Alzheimer's is an epidemic that touches 13 percent of all Americans. My maternal grandmother, who is 95, has the disease. She still knows who I am but believes my grandfather, who died in 1989, is alive and living with another woman.

My paternal grandmother, who also had Alzheimer's before she died five years ago, had to be strapped to her bed at times because she became too combative.

Everyone has an Alzheimer's story and each one of them is heartbreaking. There are forgotten faces, lost memories, unreturned hugs. Last week, hope emerged when the Food and Drug Administration approved a much-anticipated test that can detect proteins in the brain that are related to Alzheimer's.

Although it's not a definitive test, this could be the new tool that enables doctors to make an earlier diagnosis of dementia and pave the way for testing other drugs. That could be a good thing, because the lack of a cure for Alzheimer's is a frustrating dead-end for thousands of families.

"Once you get Alzheimer's, regardless of how many pills you get, you are doomed," said Mrs. Spino, a feisty but gentle woman who was born in Guatemala. "You're existing, but you're not living."

That's a bold statement but, then again, Alzheimer's is a bold illness. Mrs. Spino and her family have attacked the disease head on, managing with grace its emotional ups and downs.

In the absence of a cure, Mrs. Spino found her own arsenal of remedies: Taking her husband to his longtime barber to see familiar faces, bathing and shaving him, and not letting him sit in front of the TV for hours at a time.

"Would you like to have ice cream?" she'll ask, prompting his face to light up at the thought of a favorite treat.

As her husband becomes more withdrawn, she tries to stimulate what's left of his once brilliant mind. Their Alzheimer's journey seems more bearable because she hasn't lost hope. And because she believes in maintaining her husband's dignity.

Until there's a way to cure Alzheimer's, Mrs. Spino's solution is better than anything doctors can offer.

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