Anticipating limitations from ALS, family begins renovating home



At the Alexanders' home in O'Hara, there are no more raised thresholds.

The master bedroom, now on the second floor, is being moved to the first. The new room is large enough for a wheelchair to move around and contains a closet to hold medical equipment. The adjacent bathroom has a hands-free toilet.

They are changes that, right now, are not imperative. Eventually, though, they likely will be.

Neil Alexander, 47, an executive at Downtown-headquartered financial firm Hefren-Tillotson, was diagnosed in June 2011 with amyotrophic lateral sclerosis.

The condition, more commonly known as Lou Gehrig's disease, causes degeneration of the motor neurons. A person's mind stays intact, but the brain loses the ability to control muscle movement, likely leading to complete paralysis, then trouble swallowing and breathing.

Life expectancy for the average person with ALS is two to five years after diagnosis.

Mr. Alexander and his wife, Suzanne, who have an 10-year-old daughter and an 8-year-old son, spent the first few months after the diagnosis preparing to die.

Then, they decided to live.

They founded LiveLikeLou.org, a fund that since last March has been raising awareness of ALS, supporting research and providing patient care.

"When you make your decision that you want to live, there's a lot of implications," Mrs. Alexander said. "You have to be willing to think about that now. Neil's decided he wants to live, and we want to live gracefully."

It's hard to tell, just glancing at him, that Mr. Alexander has ALS. But the muscles in his hands are atrophying, and he increasingly has trouble doing fine motor tasks, such as fastening his belt. He clears his throat frequently, another symptom, and his wife says she's noticed a slight limp.

Someday, he won't be able to walk up stairs. He'll need a wheelchair, and eventually, the family will need a system to move him from his bed to the bathroom.

"You have to think about stuff in real detail," Mrs. Alexander said. "How will we move? How will we get around? It's just very tactical. We're not there yet, so we just have to imagine it."

To help them imagine it, they hired local architect Larry Stephens to design an addition to their house, and local homebuilder Thomas Bittner to build it. They also consulted with Accessible Dreams, a non-profit based in Washington, Pa., that provided advice on creating an accessible home.

Prior to the renovation, the Alexanders had a two-story, four-bedroom home with an attached garage. During their home renovation, which began in July and is mostly completed, they tore down the garage, added space for another bedroom, bathroom and a wide hallway, and then attached a new garage.

Last week, the Alexanders provided a tour of their addition, explaining the details that go into making a house accessible for their future.

The lighting in the garage is one such detail. Instead of positioning ceiling lights directly above where a car will park, the lights are placed a few feet to the side. That prevents shadows for when Mrs. Alexander must help her husband out of the car.

Elsewhere in the addition, the floors are all flush with the doorways to accommodate a wheelchair. A large hallway space between the garage and the bedroom could someday serve as the location of a desk used by a home healthcare worker.

The bedroom is large enough that it has space for a wheelchair to move around, for a bed or beds as needed, an entertainment center and for chairs or a table so the Alexander children have their own space in the room.

Within the walls and the ceiling, there are more details. The ceiling is fortified to support the installation of an electric lift system, which will transfer Mr. Alexander from the bed to the bathroom. Two holes in the wall will accommodate future oxygen lines that will run to tanks stored in a closet.

The ceiling also includes skylights and something the Alexanders thought wasn't quite them but would be fun -- a chandelier.

"We're not making it like a hospital room, that's the key," Mr. Alexander said. "We're having a little fun with it."

The attached bathroom, with a shower floor that stretches across the area, was designed to be "a therapeutic place." Since picking up soap has become difficult for Mr. Alexander, they installed dispensers with soap and shampoo on the side of the shower, which has multiple faucet heads at different heights and angles. There is enough room to eventually add a portable therapy tub.

The toilet, with functions that somewhat resemble a bidet, has a motion-activated lid and can be programmed to be completely hands-free.

"It's all about prolonging independence, and keeping dignity, for everybody," Mrs. Alexander said.

Their bedroom has an alcove that's been dubbed "Neil's command center." It's a space where he can read and use a computer to continue running LiveLikeLou.org. He is already testing software that will allow him to control his computer with his voice.

The main work remaining is to add a deck accessible from the bedroom. The Alexanders have already installed a generator, in case the power goes out when Mr. Alexander is using a ventilator.

Mr. Alexander, a lawyer who has spent his career advising people about financial and retirement planning, said both LiveLikeLou.org and the renovations to their house are reflective of his and his wife's personalities and their drive to plan things. The ALS diagnosis, about which little can be done, prompted them to figure out what they can do.

It took a lot of courage for her husband to imagine life as it will become with ALS, Mrs. Alexander said.

"You really have to imagine your life, and decide to be OK with it."

The Alexanders acknowledge that many people facing what they are would not be able to undertake such extensive renovations, whose costs they didn't detail.

Through LiveLikeLou.org, the Alexanders have established a patient care fund at the Western Pennsylvania Chapter of the ALS Association to help people with home renovations, such as wheelchair ramps or widening doors.

They said they are fortunate to be able to take the steps to make sure that, as the disease progresses, their house will still feel like their home. They think it will.

Kaitlynn Riely: kriely@post-gazette.com or 412-263-1707.

region - health

First Published December 24, 2012 9:30 PM


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