The new face of ALS

July 26, 2007
By STEPHANIE FOSNIGHT Staff Writer


When a photographer asks the Chamernik children to sit next to their mom Aimee, they clamber onto the sofa, wrap their arms around their mother and grin obligingly for the camera. While 3-year-old Zachary just seems happy to be sitting on Mom's lap, 9-year-old Nick and 7-year-old Emily know that their mother is dying and they've joined in her fight to make the world aware of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease.

"ALS is a disease that, if you get it, means you have two to five more years to live," said Nick, who's explained the disease before at school, on WGN radio (which named him 2006 Kid of the Year for his efforts) and at the Grayslake Farmers Market, where he and Emily sell their homemade Cookies for a Cure and magnets to raise research dollars. This year's event will be 3 to 7 p.m. Aug. 8 at Center and Slusser Streets in downtown Grayslake.



"ALS weakens your muscles, steals your voice, puts you off balance and eventually kills you," he said. "My mom has ALS and I want her to survive as many years as she can."

Jim and Aimee Chamernik went into an emotional tailspin when they learned three years ago that Aimee, now 37, had ALS. But as the Grayslake couple emerged from the devastation caused by the initial diagnosis, they made two key decisions.

"My first goal is to spend as much time making memories with my family as I can," said Aimee Chamernik, whose youngest child was just 9 months old when she was diagnosed in September 2004. "My other goal is to do everything I can to raise awareness, so there will be a day in the future when ALS is curable."

ALS, which often starts with weakness in the hands or feet, attacks motor neurons so that they can no longer control muscle cells. The neurons eventually die and the patient becomes increasingly paralyzed, to the point where he or she no longer has the muscle strength to breathe alone. Most ALS patients die of respiratory complications.

The disease is incurable and the cause is unknown, although it sprang to the public consciousness after baseball hero Lou Gehrig died of the disease, as depicted in the 1942 film "Pride of the Yankees."

Aimee's mission
While treatment and care options for ALS patients have improved tremendously in recent years, allowing them to lead relatively full lives with adaptive devices that help them communicate, get around and breathe, what really drives Aimee Chamernik's commitment to awareness is knowing ALS still kills most of its victims just a few years after diagnosis.

"Lou Gehrig died 66 years ago but my prognosis is no better than his was," she said. "The attention hasn't been there for research funding."

Chamernik pointed out how far HIV/AIDS treatment, for example, has come because of research dollars.

"I'm not trying to pit one disease against another, but HIV positive patients now have a life expectancy of 24 years," she said. "What's frustrating is knowing what our country is capable of if we have intention and effort focused on solving something."

Unlike the highly communicable AIDS virus, ALS is considered an orphan disease because it affects a relatively small number of patients--about 5,000 people in America get the disease each year. However, they almost all die within a few years, so tens of thousands have died since Lou Gehrig.

Lack of funding
ALS researcher and clinical neurologist Teepu Siddique, M.D., also bemoans the lack of research funding. Dr. Siddique and his colleagues helped identify the gene that causes ALS in about 10 percent of patients, but they have been stymied in their efforts to bring the finding full circle into a viable treatment option.

"We have all of the steps in place intellectually, but we are not funded to do it, so it's slow progress," said Siddique, of Northwestern University's Feinberg School of Medicine.

Siddique is involved in numerous research projects, including one in which he is analyzing genetic data of about 1,400 ALS patients. This study is yet another attempt to find the cause of the disease, which ALS experts say has been showing up more often in younger patients, including a disproportionate amount of military members who served in the 1990-1991 Persian Gulf War.

"We tried to get funding from the Department of Defense," Siddique said. "It didn't happen."

Changing demographics
The traditional ALS patient is a man in his 50s and 60s, someone just beginning retirement or enjoying the rewards of a well-lived life. Those statistics, however, may be starting to change.

"It used to be only once in awhile that you'd hear of someone in their 30s being diagnosed," said Annie Kennedy, director of the ALS division of the Muscular Dystrophy Association. "That's not rare anymore. Aimee Chamernik actually represents a demographic that is becoming the new face of ALS."

By her own account, Chamernik was just an ordinary suburban mom who'd given up her consulting job to raise her children.

"I was carting my kids around to their activities, teaching Sunday School and making cookies," she recalled. She served on the board of her daughter's preschool and was getting back into shape after Zachary's birth by running and watching her diet.

"I was probably the healthiest I've ever been," she said.

However, subtle symptoms had been showing up for awhile, starting during her last pregnancy. Nick was the first to notice something was amiss, when he asked his mom why her speech would slur as she read his bedtime stories.

The summer of 2006 doctors began intensive screening, first ruling out ALS because the motor neurons hadn't degenerated enough to show up on tests, but deep down, Chamernik knew that's what she had. Late at night, after the others had gone to sleep, she'd torture herself by reading about the disease.

"I spent a lot of nights crying," she said. "I kept thinking, 'How can my kids grow up without me? If that's what I have, will they even remember me?"

Despite the turmoil of her diagnosis, Chamernik decided to accept the condition and to do what she could to help her family and others. Although she calls herself a "reluctant" ALS poster child, she's glad she chose to go public with her story, especially since she appears to have a slow-progressing form of the disease.

"I feel so compelled to draw attention to it and to do what I can while I can," said Chamernik, whose fundraising team raised more than $40,000 last year during a fundraising walk.

The Chamerniks maintain a Web site (www.askaboutaimee.com) filled with intimate details of Aimee's daily struggles. They've made headlines for the way they've openly shared age-appropriate details with their children about how their mother is dying and for the family policy that no question is off limits.

Jim and Aimee Chamernik agree that raising awareness of ALS is worth giving up some privacy and even exposing themselves to some criticism, especially since most people are eager to learn more about the disease. When they get strange looks when out in public, either because of Aimee's wheelchair or because her failing voice won't allow her to order her own meals, Jim Chamernik gently explains his wife's condition to the server or cashier, even handing out a business card to direct them to Aimee's Web site.

"Suddenly they are very interested and compassionate," Aimee Chamernik said.

Daily life
Thus far Aimee Chamernik is able to continue her primary job of raising her children, although she's had to give more and more household chores over to her understanding husband. Although Chamernik appears healthy, she is very unsteady on her feet and must use a cane or wheelchair when she goes out. Simply taking a shower, washing her hair and brushing her teeth are Herculean tasks for a woman with uncooperative muscles, and Chamernik's right arm has become too weak to pull a pot of macaroni and cheese off the stove.

"I can barely do it two-handed, and there will come a time when I can't do it at all," Chamernik said. She has trouble swallowing and her voice is very soft, slow and slurred--Nick calls it "blurry."

At one point during the interview, Chamernik's weak voice gave out, and she croakingly asked Zachary to get her iced tea from the kitchen. Nick jumped up to get the drink, but his mother whispered for him to let his younger brother, Zachary do it.

Moments later Zachary returned, smiling broadly, as he carefully carried his mother's bottle of iced tea. She thanked him, took a few long sips and watched her youngest son toddle back upstairs.

"One benefit to this is seeing how helpful my kids are, how eager they are to do whatever they can to be my arms and legs," she said.

The Chamernik family has talked about some serious topics the last few years, including death and heaven, hospitals and stepmothers. Jim Chamernik has a difficult time seeing older couples together, his wife said, since they will never reach that stage. For now, though, Aimee Chamernik is grateful for every day she gets to spend with her husband and her children.
http://www.pioneerlocal.com/480167,o...607-s1.article


Grayslake resident Aimee Chamernik spends as much time as she can building memories with her family. From left: 7-year-old Emily, Aimee, 3-year-old Zachary and 9-year-old Nicholas. Aimee, 37, was diagnosed with ALS/Lou Gehrig's disease almost three years ago and, along with her husband Jim, is determined to draw attention to the disease, even though it means sometimes sacrificing their family's privacy.
(Joe Shuman/For Pioneer Press)

» Click to enlarge image

Aimee Chamernik appears healthy in a photograph but has trouble speaking, swallowing, balancing, lifting, using her right arm and performing other motor functions. She relies on a cane or wheelchair when out in public.
(Joe Shuman/For Pioneer Press)

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