The first symptoms appeared a year ago, when Tricia Evans noticed her legs getting tired.
There was no pain, just weakness, and she had developed a slight limp.
A busy working mom of two, Evans didn’t go to the doctor right away. When she did, in July, doctors prescribed exercise to strengthen her muscles.
But the weakness persisted, and she was referred to a neurologist, who was the first to utter the dreaded acronym ALS: amyotrophic lateral sclerosis.
Better known as Lou Gehrig’s disease, ALS has a devastating course. Motor neurons connecting the brain to muscles throughout the body gradually degenerate and die, leaving the brain unable to control muscles in the legs, arms, lungs and other vital organs. As it progresses, usually over three to five years, patients can become totally paralyzed.
Evans, 40, went through two months of tests to rule out multiple sclerosis and other possibilities, but on Oct. 1, doctors delivered the final diagnosis: ALS. She got a second opinion, and a third in St. Louis, but the answer was the same. Even then, she held out hope.
She started using a cane but still worked part time as a special education teacher at Westview School. She was soon forced to switch to a walker, then a wheelchair. The family began to accept her condition, and a new way of life.
Evans didn’t get angry. It’s just not her. But she sometimes asks, Why me? Why us?
Six years ago, her second daughter, Sarah, was born with Down syndrome. The odds of both Down’s and ALS occurring in the same family? About 1 in 4 million.
At the time, Evans says, she thought it was “the worst possible thing.” Of course it wasn’t. Sarah, now a funny, determined redhead, has brought so much happiness to their lives.
They’ve always been, Evans says, “a normal, happy family” who like to make each other laugh.
She met her husband, Jim, when they were still teenagers, after her father became pastor at the church in Milford that Jim’s family attended. She was 18, he was 19.
They dated all through college, while she was at Illinois State University and he was at Illinois Wesleyan. They married in 1994 and moved to their house just off Elm Boulevard in Champaign after she got a job teaching at Paxton-Buckley-Loda High School.
When daughter Kelly, another beautiful redhead, was born in 1999, Evans decided to quit work to stay home with her — a decision she is thankful for now. She went back to work in 2009 when Sarah entered kindergarten. Just nine months later, the first symptoms of ALS appeared.
Evans is a generally happy person, the optimist who balances Jim’s worrying nature. But she does cry sometimes. So hard she can’t stop.
“It hits me at different times,” she says.
The hardest part is accepting that “it’s not going to get better.” And continually adjusting. They get used to one phase, Jim Evans says, and something else happens.
She only used a cane for two months before switching to a walker, then was so wobbly she fell several times before moving on to a wheelchair.
“I cried when I brought that cane home, and now I think, ‘If only...’” she says.
But she also sees each as a link to independence, as “not giving in to the disease.”
She just got a power wheelchair, a big improvement, and the family recently acquired an accessible van with a wheelchair lift, which has been “such a blessing.” Now, friends can take her places with ease.
“I didn’t want to go anywhere for a long time. It was so hard to get in and out of the car,” she says.
Evans is trying to live in the moment, and let go of all the things she used to scramble to do each day, like laundry, groceries, cleaning.
“I just don’t even worry about getting things done. I never thought I’d say that,” she says. “You really don’t miss it either. I’ll just sit back and look at the kids. I’m just enjoying the little moments.”
Friends, family, co-workers, church members and the Down Syndrome Network have all pitched in to help. Their parents, in Milford, visit often to help with the girls, mow the lawn, fix things around the house. Friends run errands, drop off meals or pick up Kelly and Sarah at school.
When the Evanses’ basement flooded recently, close friends came over and announced “we’ve dealt with this before,” and spent the entire weekend mopping up the mess.
The Evans family’s church, Faith United Methodist in Champaign, built a wheelchair ramp and sent the family to Disney World in December, a trip they would never have been able to take otherwise, Evans says. The church has also partnered with the Down Syndrome Network on a fundraiser scheduled for June 17.
One of the organizers is Wendy Hagen Barker, who has a son with Down syndrome and has known Evans for five years. She says her story hits home with any mom, especially parents of children with special needs.
“It’s just that much harder. You have to think of your child’s future more than you would a typical child,” Barker says.
“It’s something that could happen to anybody. She’s my age, she’s in perfect health, everything was going fine, and then, boom, she wakes up and she’s limping. Tricia is just handling this with such grace. I know I would be mad at the world and angry and bitter, and she is not.”
Giant worries loom, of course, mostly about her daughters.
“The most frustrating thing of all is how much it affects them — not being able to go places and help them as much as I’d like,” Evans says.
She also frets about the physical and emotional toll on her husband, “who’s with me all the time, other than work.”
It’s so hard to think about the future. She can still talk to her girls, hear about their day, give advice about friends and school. She worries about the day she’ll no longer be able to talk — one of the things she dreads the most — or give them a hug.
“Right now, I can still be a big part of their lives,” she says. “I don’t want that to change.”
She wants to keep enjoying moments like Kelly’s fifth-grade promotion ceremony. She wants to be there when she goes to middle school and high school, “just to be someone to talk to and listen, all that girl stuff.”
“I know Kelly and I would be great friends when she’s a mom. Not being there for her to call me ...”
Evans started a journal for the girls, but she can no longer hold a pen in her left hand, the one she writes with. Her right hand is also growing weak.
She’d like to make them a video, but “it’s hard to think about them watching it,” she says. She has recorded some books, so they’ll always have her voice.
Evans takes solace in her strong faith, something that’s been with her always. She also leans on several women she met online who were diagnosed with ALS last summer, too, all moms who are teachers about her own age. With them, she can vent and share tips about how to cope. They understand.
Last week, Evans learned that one of them, a woman with four children, had passed away. The news hit her hard. The disease is so unpredictable, she says. Anything can happen.
Sometimes, Evans bristles when she hears people complain about everyday life, or old age.
“I think, ‘You’re healthy,’ ” Evans says. “Getting old is a privilege. It’s a blessing.”
For now, she feels fine. A breathing machine helps rest her lungs at night. Physical therapy keeps her muscles loose.
She spends her days playing with the girls, helping them with homework, reading “The Wizard of Oz” with Sarah (her favorite). Or just drinking them in.
On Thursday, she and Kelly had a special night, traveling to Indianapolis to see “Glee! Live! In Concert!”
And the family left Saturday for Florida on a beach trip arranged by their families, where they planned to “relax and do nothing all week. We just wanted a place where we could see the sunset and collect seashells.”
After that, Evans will revel in every moment, enjoying her girls, her husband, life.
“I want to have fun,” she says.
A benefit concert/auction to help the Evans family of Champaign is scheduled for 7 to 11 p.m. Friday, June 17, at the Hilton Garden Inn in Champaign.
It will feature live ’80s music from “The Brat Pack,” as well as hors d’oeuvres, a cash bar, silent auction and raffle prizes. Admission is $25 per person, or $500 for a VIP reserved table seating for eight people.
Tickets are available at First Federal Savings Bank, 1311 S. Neil St., C; Faith United Methodist Church, 1719 S. Prospect, or by phone at 721-2350.
Proceeds from ticket sales and the auction will help Jim and Tricia Evans with medical or accessibility expenses or other needs.
Prizes include a hot-air balloon ride, an Illini tailgate package with six tickets to the Ohio State game, baseball tickets, gift certificates and a spa package.
Donations can also be mailed to the Evans Family Benefit, First Federal Bank, C/O Elizabeth Reed, P.O. Box 1010, Champaign, IL 61824.
ALS affects roughly 1 in 100,000 people and its causes are largely unknown. for more information, visit www.alsa.org.
Here's the link to the Evans Family Benefit Facebook page.
Reporter Julie Wurth blogs about family issues and writes about social services and the University of Illinois for The News-Gazette. Her column, "Are We There Yet?" appears in the News-Gazette every urth at 35other Tuesday. You can leave a comment below or contact her at email@example.com or follow her on Twitter at www.twitter.com/jawurth
At top: Tricia Evans reads a book with her daughters Sarah, left, and Kelly, and the family dog, Benji, at their home in Champaign last week. John Dixon/News-Gazette
Middle: Tricia and Jim Evans with their daughters Kelly and Sarah. Copyright Sweet Pea Photography
Bottom: Tricia and Kelly Evans. Copyright Sweet Pea Photography