Lorie Sandoval, A Malibu resident diagnosed late with Lou Gehrig’s Disease by Kaiser.
Kaiser doctors failed to diagnose Lorie’s illness as ALS until it was late-stage. Although there is no cure, early detection can lead to treatments that slow the disease’s progression.
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Getting sick in the recession: Celebs pitch in to help woman with Lou Gehrig’s disease
Ann Brenoff, AOL.com Oct 12th 2010 2:00PM
Lorie Sandoval, 53, is a middle-class wife and mother who had the misfortune of getting seriously sick in the midst of the Great Recession. Her diagnosis: ALS (amyotrophic lateral sclerosis — Lou Gehrig’s disease) is tough enough, but the financial toll it has taken on the Sandoval family’s finances is just as severe.
It didn’t matter that Lorie had insurance through a Kaiser HMO plan. Deductibles, and uncovered tests and treatments, combined with missed time in the family business have put the family on a financial precipice. As a result, the Sandovals are grappling with greatly reduced income, unpaid bills, the potential loss of their home and no money to get Lorie quality-of-life things like a van with a lift or a hospital bed with side rails so she won’t fall in the night.
More Than 100 Medical Visits
As many caregivers can attest, dealing with insurance companies is a full-time job in itself. Kaiser hasn’t made the Sandovals’ life any easier, husband Leo said. Despite his wife’s more than 100 medical visits over three years, he says that Kaiser doctors failed to diagnose Lorie’s illness as ALS until it was late-stage. Although there is no cure, early detection can lead to treatments that slow the disease’s progression.
At first, the doctors said it was chronic fatigue syndrome that was causing Lorie to feel so tired that she couldn’t get off the couch. Then, when she could no longer use her right hand, they diagnosed her with carpal tunnel syndrome. As Lorie’s body began aching every time she moved, she went back to the doctor. The diagnosis? Scoliosis. By the time Kaiser finally sent Lorie to a neurologist in Panorama City — an almost 100-mile round-trip along traffic-congested roads, Lorie’s ALS had greatly advanced.
Leo’s list of places where Kaiser dropped the ball is long. The insurer wouldn’t cover a $3,200 medication that one of its own doctors prescribed. The roster of therapists the Kaiser ALS team provided was six years old and half the practitioners on it were out of business. “Each encounter is like a wrestling match, just trying to deal with them,” he said.
Kaiser spokesman Jim Anderson said he couldn’t comment on Lorie Sandoval’s case, citing patient privacy laws.
A Downward Spiral
Leo said the past few years have been marked by his wife’s steady deterioration. “She worked out, ate right — she even competed in a triathlon,” he said. She started to feel more tired a few years ago, but doctors kept minimizing what was ailing her. “We knew something was wrong,” Leo said. Last Thanksgiving, “we just did nothing because she couldn’t,” Leo said. And when it came time to watch their 12-year-old daughter Sadie dance in the community’s performance of The Nutcracker last Christmas, “Lorie could barely get there, as much as she wanted to.”
While Lorie and her family grapple with such painful decisions like whether she should have a feeding tube and tracheotomy performed, their door and window business has been ravaged by the recession and from Leo’s need to take time away from work to care for his wife. Sadie is a good kid who fortunately does homework on her own, he said. But she has also felt the pressure.
Dancing is terribly important to Sadie, which is why Leo had to steel himself last month when he needed to approach her studio, Dance Star Studio in Malibu, and ask for a payment plan. “I was ready to offer to barter, you know, make props or build the sets or something.” But the dance studio director Charissa Seaman cut him off at the pass and told him his money wasn’t good there anymore. “Just send her,” he related.
The leading organizations that raise money for ALS and muscular dystrophy spend most of what they raise on research and administration. Very little is doled out to victims of the disease who are struggling to adapt their homes and lifestyles to accommodate their new-found disabilities, Leo said. He balked when one of these groups asked his wife to personally go to the local supermarket manager and thank him for putting a collection can by the checkout line. “They were more than happy to use Lorie, but unwilling to provide any assistance,” Leo said.
A Community Comes Together
Yet, there have been some bright spots. Malibu, where the Sandovals live, has rallied around the family in an awe-inspiring way. A friend of Sadie’s told her parents she wanted to forgo a birthday celebration and instead donate the money to Sadie’s family. Friends have pitched in with rides, and even strangers have helped out. “There was one Sunday when someone I don’t even know came by to walk my dogs,” said Leo.
A group of five families insisted that he let them take over his utility bills, and the landlord for his office let him off the hook on the lease when he moved his business to his house to save money for Lorie’s care.
The community’s charitable spirit has culminated into a large celebrity-studded fundraiser, which is planned for this Friday night. Actress Leslie-Ann Down picked up the check for the location rental fee and David Spade has donated $1,000. Even Malibu’s most-reclusive resident, Barbra Streisand, donated a leather laptop case for auction. And rocker Rick Springfield donated a signed guitar for auction. There are show taping tickets and a cast meet-and-greet for Melissa and Joey, and Wizards of Waverly Place, plus Justin Bieber concert tickets. The event photographer is Richard Dean Anderson, better known as MacGyver. Word has spread grassroots-style, neighbor-to-neighbor. And some of those neighbors just happen to be celebrities.
Leo is uncomfortable in the limelight. He grew up believing that you kept your business to yourself. “You don’t put your garbage in someone else’s trash can,” he said. Still, he knows he needs help to keep his house and care for his family. Thus far, he’s paid $15,000 out-of-pocket to build a wheelchair ramp and still hopes to buy a van with a lift to make it easier to transport his wife. His goal is to hire a caregiver from 7 a.m. to 7 p.m. to allow him to return to work and become more involved with his daughter.
Contributions may be sent to the Lorie Sandoval Family Foundation, P.O. Box 2122, Malibu, CA. 90265. For more information on how to place an auction bid, e-mail Sandovalfamilyparty@gmail.com.