All About Multiple Sclerosis

More MS news articles for January 2004

Home, sweet home

For multiple sclerosis patient, adapting her home was a gradual process

http://www.silive.com/living/advance/index.ssf?/base/living/107391879184420.xml

Monday, January 12, 2004
Jennifer Sammartino
The Staten Island Advance

When Carol Marcus was diagnosed with multiple sclerosis in 1991, she knew what the futre would bring.

A year later, she began using a wheelchair. The chair made it difficult to navigate her Westerleigh home and to go out of the house.

Over the next few years, she and her husband, Richard, worked on remodeling their home.

"We had to make a room for me," said Mrs. Marcus, referring to her bedroom on the first floor of the house, which was once a play room for her now-adult children.

Next to that, the bathroom is comprised of a roll-in shower with a door, grab bar, a high toilet seat, a sink she can roll under and several items on wheels, including a portable shelving unit that houses towels and other necessities.

The shower door is unusual for a handicap bathroom, she noted. "I had to fight for that," she said, noting that most handicap accessible shower/bathrooms are one unit, with a drain on the floor. "Many are one room. But I can't mop the floors, so I needed a door."

While most of the house was remodeled in 1992, the kitchen wasn't done until 2000. "These things are done slowly. It's very expensive so you do things in a gradual way," she noted.

When remodeling a home for handicap accessibility, yield to the professionals, insisted JoEllen Zembruski-Ruple, program director for recreation and rehabilitation services for the National Multiple Sclerosis Society's New York City chapter.

One of the Society's programs, the home modification program, can even offer financial assistance to those who can show hardship, or those who don't have insurance or whose claims have been denied.

"We recommend that when people are thinking about doing it, they rely on the expertise of a registered occupational therapist," said Ms. Zembruski-Ruple. "They need to be able to assess the individual's level of functions, barriers in the home and make recommendations."

The whole process is taxing.

"It's very difficult," echoed Richard Marcus, Carol's husband. "It's like a new mortgage."

The house is a dream come true for Mrs. Marcus -- although it took a very long time to complete.

"You try to make things nice," she said, propelling her wheelchair through her bedroom. "This is my environment now."

And remodeling to accommodate a handicap doesn't mean ugly fixtures.

"One shouldn't be afraid of modifying a home," Ms. Zembruski-Ruple said. "Universal design is for all; there are ways to look at a design concept that is aesthetically pleasing. There are very high end, lovely design models."

The windows in the bedroom were replaced so they are easy to open. "They're easy for me to operate. It's the little things," she said, pointing out a chain fan pull that drops down low enough for her to reach it.

"Everything is on wheels," Mrs. Marcus pointed out, steering herself toward the kitchen, with her service dog, Tom, by her side.

A chair lift runs the length of the stairs to the second floor and a manual wheelchair waits for her upstairs.

The kitchen table is on wheels. "I can go under it," Mrs. Marcus said, rolling the chair under an extension of the table. "That's very unusual.

"I love things on wheels," she said, moving her motorized chair into the kitchen, revealing dog food containers on wheels and a garbage pail on wheels. Next to the kitchen, which took a year to plan, a closet hides a washer and dryer that Mrs. Marcus uses.

Mrs. Marcus designed the kitchen. It has a "drive in" sink with a lever that's easy to pull for running water.

Next to the oven, which opens sideways, is a "landing station" -- a place where Mrs. Marcus can place things as she takes them out of the oven.

Each cupboard is equipped with rolling shelves that pull out and the refrigerator is not as deep as most, to make reaching inside for things easier.

"It's important to self educate," noted Ms. Zembruski-Ruple, adding that ergonomics and safety are important issues to consider. "There's no one thumbprint for everyone."

And don't forget to compare prices, Ms. Zembruski-Ruple said. "Just because it's a modification doesn't mean you shouldn't shop around."

The backyard, which used to be grass, is now a large deck. "It was too lumpy," Mrs. Marcus said. But that doesn't stop her from gardening.

"Gardening was an important part of my life," said Mrs. Marcus, noting that many people have to give up their interests after diagnosis. "I wouldn't do that," she said. She now does her gardening in window boxes along the deck that she can reach without incident.

"I'm very proud of that," Mr. Marcus added. "What she couldn't give up, she adapted."

Next to the deck, the garage houses a lift so that Mrs. Marcus can get from the house, which is several steps up from the street, to their van. The lift is equipped with a phone for emergencies.

"All of this stuff takes a lot of thinking, planning, research," she said. "If you don't do your homework, you don't get what you need. I wanted what I wanted. There's all of these details. You give it a lot of thought. Make things as simple as possible."

Accessibility is a problem in other people's homes, Mrs. Marcus said.

"Not too many people have accessible homes. And what's accessible for one person may not be for another," she said.

Mrs. Marcus, in turn, entertains often. "We have dinner parties, we do Christmas," she said. Last month, her fireplace was flanked with Christmas stockings for the entire family, including Tom, the service dog.

In addition, Ms. Zembruski-Ruple noted that to modify a home, the patient doesn't even need to be a wheelchair user. "Fatigue accompanies MS," she said, citing that some may choose to remodel to make the best use of their energy.

"The ultimate goal is independence, functioning in the home," she said. "To lead the most productive, satisfying life."

Mrs. Marcus concurred. "We do the best we can."
 

Copyright © 2004, The Staten Island Advance