More MS news articles for Jan 2002

To MS disabled, it's a house with heart

http://seattlepi.nwsource.com/hahn/56125_hahn29.shtml

Tuesday, January 29, 2002
By JON HAHN
SEATTLE POST-INTELLIGENCER COLUMNIST

The saying that it takes a whole village to raise a child extends well beyond childhood, to caring for those of us with special needs. And it sort of figures that a special home for people disabled by multiple sclerosis would be built in a place like West Seattle, where there is a special sense of community.

It's a small house with a big heart, just across Walnut Avenue Southwest from the Hiawatha Community Center. It's called Aerial House, thought to be the first of its kind in the nation, custom-designed and put together to meet the special housing needs of about a half-dozen residents who might otherwise find themselves in nursing homes.

And it's much more than just a house to Kim Noyola, 31, and Jeanette Rigney, 35, who moved in last week. "I feel very appreciative, very blessed," said Jeanette, a former Rainier Beach High School basketball star who now must get about with a walker or wheelchair.

"Like anyone else who gets MS, you wonder 'Why me, God?!' And you struggle to get along, and then something wonderful like this happens, and you think 'Maybe the Lord is looking out for me,'" she said.

Jeanette, a divorced mother of two and former grade-school basketball coach, and Kim, a former assistant bank manager, both are on disability. Multiple sclerosis, an insidious disease of the central nervous system, with no known cause or cure, typically affects middle-age people.

Washington state has one of the nation's highest percentages of residents with MS. More than 70 percent of the estimated 6,000 people with MS in King County are women. And while most continue to live as normal a life as possible with a wide range of symptoms, at least 20 percent end up in some kind of assisted-care facility.

Such a future -- if you can call it any kind of a future -- was on their respective and collective horizons when Kim and Jeanette heard about Aerial House. It's been three years in the works, partly because of the expense and partly because it took a compassionate and hard-working relationship between the Multiple Sclerosis Association of King County and Multifaith Works, an interfaith group that pioneered housing and care programs for AIDS/HIV people here.

And Aerial House came to be in much the same way as Jeanette's epiphany. Both groups were committed to the concept and working on plans. "Our housing committee met one day a couple years ago and realized we had all our ducks in a row," said Bette Jingling, an MSA board member who also has MS. "And someone said: 'All we need now is for someone to give us a house!'"

Three weeks later, an anonymous donor who had purchased the Walnut Avenue real estate for a handicapped friend (since passed away), gave the house and property to the MSA-Multifaith Works project, Jingling explained. That donation, worth an estimated $280,000, really launched the bricks-and-mortar project.

Multifaith Works and the MSA began beating the bushes and came up with enough donated and pro-bono services to launch a complete redesign, gutting and refurbishing of the 2,200-square-foot home. What has resulted -- and it will be formally dedicated in a couple weeks -- doesn't look so special, unless you've ever tried to find a home with hallways and doorways wide enough for walkers and wheelchairs.

The open feeling of the house allows the eye -- and any disabled person -- to move and function as freely as possible. Countertops are low and sturdy. There is room beneath for legs in wheelchairs. Kitchen shelves pull or revolve out, and all appliance controls are right up front. Each resident has a bedroom, and there are comfortable common living areas on the main floor and lower level. Outside, a sloping paving-stone pathway makes a subtle approach from sidewalk to front entrance, without steps.

Jeanette was delighted to demonstrate the latest in technology: a lift-type elevator connecting the house's two levels, hidden behind a door at the end of a wide hallway. Kim seemed especially happy with one of the home's two barrier-free bathrooms with roll-in showers. "When I saw this, when I first used it, I said: 'Wow!' This far exceeds any expectations I had" she said. "I came to hate regular bathtubs, where you had to lift each leg in and out." Jeanette echoed the sentiment: "When I'm in the shower, it's just awesome!"

The laundry list of donors of money and services begins with Bette's architect husband, Douglas Jingling, and Susan Duncan of ADAptations, who volunteered hundreds of hours. The necessary legal work was done pro-bono by Ellen Szymanski of Graham and Dunn. The MS Society and Boeing Employees Community Fund are major project contributors. Daniel Winterbottom of the University of Washington landscape architecture faculty donated the landscape design work, and numerous materials for the project also were donated.

Not only do Kim and Jeanette and the home's other future residents get an open-ended housing deal -- rents will be scaled on a need and ability-to-pay basis, averaging $350 monthly, and utilities are covered by the joint landlords -- but instead of being warehoused in a convalescent home, the Aerial House residents get a new lease on life.

For Kim, it means being able to maintain her independence while continuing her regular volunteer services at Group Health on Capitol Hill. And for Jeanette, who gets about in the larger world in an electric wheelchair and a ramped van, it means returning to college full time. It means an open-ended future instead of a viable and productive life imploding on itself like a black hole in space and time.

That Aerial House even exists is more than some generally accepted notion of need, or the fact that the two main sponsoring groups managed to come up with much of the $254,000 redesign and refurbishing price tag (and in fact, they still need about $150,000 in donations).

It's up and running because of the commitment of groups such as Multifaith Works and the Multiple Sclerosis Association, and the many others enlisted into the effort.

"I think the key thing is that we are providing people with a home in which they can continue to live as independently as possible for as long as possible, a home in which they hopefully will also find support and friendship and an end to the isolation which this disease can produce," noted Rabbi Anson Laytner, executive director of Multifaith Works.

"This kind of facility is beyond the affordability of most people, were they to try to live in their own homes; that is why ours is a group facility. If successful, we hope to build additional facilities in the future."

Information: Aerial House's formal dedication is at 2 p.m., Feb. 10, at 2712 Walnut Ave. S.W., which is a stone's throw northeast of West Seattle High School. Information on the project or donations available at Multifaith Works, http://www.multifaith.org or 206-324-1520; or Multiple Sclerosis Association, http://www.msa-sea.org or 206-633-2606.

Jon Hahn is a staff columnist who writes three times a week in the P-I.
 

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