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More MS news articles for February 2004

Multiple Sclerosis Patient Yearns For New Living Situation

Woman Lives Among Frail, Elderly

February 9, 2004

Imagine being young and healthy one day, then getting a diagnosis that progressively removes your ability to care for yourself, and leaves you in a nursing home.

NewsCenter 5's Anthony Everett reported that 47-year-old Geena Pulicari is living that life. She yearns for the company of people her age and activities that stave off her depression, but instead she lives among the frail and elderly. There are few other options.

"I was fun-loving. I liked making people laugh," Pulicari said.

Before she was diagnosed with multiple sclerosis, old friends described Pulicari as a live wire with an "anything goes" philosophy. But over the past four years her disease has rendered her helpless.

"This took everything away, everything," Pulicari said.

She treasures the house she bought in Seabrook, N.H., just before her diagnosis. Her friend Ron drove her there for NewsCenter 5's interview. But later that day, Pulicari was back in a nursing home north of Boston. She's deemed unsafe to live at home.

"I cry every night there," she said.

Most of her fellow residents are in their 80s or older. Pulicari stays in bed most of the day. The limited staff doesn't have the resources or expertise to care for the young and disabled. It's an all-too-common dilemma, according to the Multiple Sclerosis Society. They've filed legislation to study the pressing need for improved long-term care options for young people with neurological diseases

"They are in these long-term care facilities where they may be the only resident there among a residential facility filled with elders. They are what I could call a face out of place. Very often, activities aren't geared toward young people, social life isn't there," Multiple Sclerosis Society President Linda Guiod said.

The Boston Home in Dorchester is the only facility in New England that exclusively cares for those with degenerative neurological diseases. The average age is 53. Through special reimbursements from the state and a healthy endowment, the home can afford more staff and activities. Most nursing homes don't have halls wide enough to allow motorized wheelchairs. But at The Boston Home, the halls are filled with them.

"A motorized chair can make a huge difference in the quality of your life whether you can get a door open on your own or determine what you are going to do during the day. These are people with hopes and dreams and families and want a meaningful life. We are not just what our bodies do," The Boston Home spokeswoman Marva Serotkin said.

But the waiting list at the Boston Home is long. At the nursing home, Pulicari's dreams of going home are slowly fading. All she wants now is a place to live where people recognize the youthful soul inside her weakening body.

"Where I am now is horrendous. It's not a place I would want to spend the rest of my life in. I'm still a kid. I'm still a person that I feel like never completed my life," she said.

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