Pilar Parker was diagnosed with multiple sclerosis (MS) on March 24 and with help from her family, she is not letting the scary disease dictate her lifestyle.

The Redmond resident had been experiencing numbness on the right side of her face and sought medical attention to see what the cause was. The possibilities of a stroke and brain tumor were soon ruled out, but when doctors ordered a magnetic resonance imaging (MRI) scan of Parker’s brain, they found white scarring consistent with MS. Two more MRIs of her neck and back showed more scarring. This on top of a second opinion and her symptoms lead to her diagnosis.

“I was a ‘textbook’ MS case,” the 42-year-old said.

The disease is caused by damage to the protective covering around nerve cells, which leads to nerve impulses slowing down or stopping.

FACE IT AS A FAMILY

Parker said her husband’s reaction to the diagnosis was to focus on beginning treatment as soon as possible to stop the disease’s progression.

Parker, however, was initially in disbelief and denial about her MS. When she realized the diagnosis was real, she began researching the disease and how to tell her 10-year-old fraternal twin daughters Paige and Mary Anna Parker.

“The girls’ initial reaction was fear because they did not know the symptoms and prognosis, thinking I might die,” Pilar said. “There was relief learning that it is not a deadly disease.”

She said dealing with MS was stressful for her entire family at first as they’ve come to grips with her having the disease. But the Parkers are learning about MS together. Pilar said she and her husband wanted to make sure that their daughters were included in the discussion about her disease because the unknown can be scarier than the facts.

KIDS JOURNEY CAMP

One way Paige and Mary Anna are eliminating the unknown is through Kids Journey Camp, which is organized by the National MS Society, Greater Northwest Chapter and for children with parents who have MS.

Piper Reynolds, senior manager of education and outreach for the chapter, said the camp is a light, fun and interactive experience for kids to learn about MS, ask questions and express any concerns or fears they may have about their parents’ disease.

“There’s a lot of misconception that they develop on their own,” Reynolds said about kids who are left in the dark. “If they’re not informed, they’ll start to create (unnecessary situations and fears).”

There are also typical camp activities as well.

Reynolds said campers are divided into four age groups — this year’s 46 campers range from 8 to 13 years — and the camp is broken down into three components: Know it, move it and feel it.

Know it is about educating kids on MS and how it affects the body. Move it consists of props for the kids to use so they can simulate MS symptoms such as dizziness, vertigo and tremors. Feel it is an opportunity for kids to discuss what they’ve learned, share with fellow campers and counselors about their experiences with MS and tell any stories they may want others to hear.

Reynolds said the final component is also a time to encourage campers to separate the disease from their parent.

“Their parent isn’t MS,” she said. “Their parent is more than the disease.”

Everyone working at Kids Journey Camp, which is in its sixth year, is a volunteer. The camp counselors are usually adults with parents with MS, which helps them connect with their three to four campers. Other counselors may have siblings with MS or have the disease themselves. Either way, Reynolds said, they have been affected by MS.

Kids Journey Camp is from July 29-31 at IslandWood on Bainbridge Island. Reynolds said the chapter covers western and central Washington, Alaska and Montana, so kids from those states attend the camp as well, but they mostly get Washingtonians because it’s more geographically convenient for them.

The Parker twins have visited IslandWood, which is a 255-acre outdoor learning center, once before with their school and they are both excited to go back.

“We like it there,” Mary Anna said.

Paige added, “The food is yummy.”

FIGHTING MS

Both girls said they think talking to other kids with MS in their families will be very helpful for them to understand things.

To support their mother and others with MS, Mary Anna and Paige participated in the 2011 Walk MS at Husky Stadium on April 3. The twins have participated in several 5k runs and other fundraisers for different causes with Pilar, but they both said it felt really good to be part of something that will help their mother.

Reynolds said fundraisers such as the walk as well as the upcoming Bike MS from Sept. 10-11 help support the chapter’s mission to mobilize people and resources to drive research for a cure and address the challenges of everyone affected by MS.

Pilar said she plans to participate in the bike ride, which begins in Mount Vernon and passes through Skagit, Whatcom and Island counties. To register for Bike MS, visit click here.

She added that participating in these events helps her stay active, which is encouraged for those with MS. The Parkers have always been active so Pilar’s MS has not affected their day-to-day routines too much, which is their goal.

“We go about our day as we normally do,” she said. “We’re just not letting it change our life.”