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A dad's MS poses challenge for family

Wife Julie, left, and daughter Hilary help Scott Schram, center, face challenges of MS. Hilary won a scholarship to pursue nursing degree.
Wife Julie, left, and daughter Hilary help Scott Schram, center, face challenges of MS. Hilary won a scholarship to pursue nursing degree.
Nancy Perkins, Deseret Morning News

ST. GEORGE — Hilary Schram is only 18, but she knows true love when she sees it.

"Look at them," Hilary says, pointing a finger at her parents, Scott and Julie Schram, as the two can't seem to stop eyeing each other during a recent interview. "They act like middle schoolers."

That remark propels her parents into a giggle that turns quickly into a fit of laughter.

"We have fun. We've always had fun together," said Julie Schram of her husband, a youthful-looking 46-year-old man with a salt-and-pepper-sprinkled goatee and piercing blue eyes. Julie and Scott grew up in the same Cedar City neighborhood and have been best friends since the second grade, they both said.

But the kind of fun these two southern Utah natives enjoy now is tempered by Scott Schram's multiple sclerosis, which was diagnosed in August 2002. At the time, Hilary Schram listened to the news of her dad's illness with the same fear as the rest of his family.

"As the MS progressed I could see how devastating it could be. It's so varied between people," she said. "We went through a lot of change really fast."

A recent graduate of Snow Canyon High School, Hilary Schram received her certified nursing assistant license during her junior year at Dixie State College and worked part time in a local nursing home.

The 4.0 honor student said she's inspired to continue her medical education by her own dad's long nursing career and current fight with the chronic unpredictable neurological disease.

A $3,000 scholarship from the National Multiple Sclerosis Society will help her accomplish that goal, she said.

"Dad spent 20 years as a nurse, and I had gone to work with him several times. I found I really enjoyed it," said Hilary. "But I can see that it's going to take people to help improve the lives of MS patients, and I want to do that."

Those afflicted with MS can experience blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis and blindness. According to the MS Society, these problems may be permanent or they may come and go.

Scott Schram first noticed he had a problem with his right arm at the age of 19 while serving a mission in Belgium for The Church of Jesus Christ of Latter-day Saints. He returned home for a month and then finished his mission, returning to Cedar City the same day as his childhood sweetheart and future wife, Julie, who went to Boston on an LDS mission.

Symptom-free years followed, during which he and Julie married and raised their family.

"Then I lost the hearing in my right ear," he said, a symptom that was followed by a rapid degradation of vision in his right eye.

"I noticed I couldn't read the monitors across the room anymore," Scott said. Practically overnight his right eye went blind. So Scott did what he knew best — he researched his symptoms and thought a possible diagnosis could be MS.

A handful of scans and examinations later, his preliminary diagnosis was verified.

"For the rest of us it was really a surprise," Julie said. "He loved his job, so there was a lot of anger, a lot of mourning for a life that's now gone."

For those who don't know how MS affects one's body, Scott has some advice.

"Don't judge a book by its cover. If you watch my gait, someone might say there goes a drunkard because I stagger," he said. "I have to touch walls to get around, and my speech is slurred."

Scott struggles to remember details of his day and what came before.

"I get very frustrated, not mad," he says.

When her dad is having a bad day, Hilary says, it's frustrating for family members, too.

"He doesn't remember what he can do sometimes," she says. "And he's always controlled things like his own medications and driving. He can't do that anymore."

Scott's sense of humor, though, is definitely intact.

"Sometimes I'm driving and just hoping that those meds kick in and he goes to sleep," Hilary teases. "He's such a bad backseat driver! He's always telling me what to do, go here, slow down, take this road, and put it in second gear! He thinks I can't read a map and he's the one who taught me!"

Scott chuckles at his daughter's description of the way he administers advice from the back seat of the family car, which kick starts another round of jibes from Hilary.

There are two more girls, Heidi, a 20-year-old student at University of Nevada at Las Vegas, and Holly, a 15-year-old student at Snow Canyon High School in the Schram family. Twelve-year-old Harrison is the only boy. He attends Lava Ridge Intermediate School and keeps a constant tab on his dad.

"I have to say that our kids have risen to the occasion," said Julie, who went back to school last year to recertify her Utah teaching certificate. "On one of his bad days, the kids are willing to sacrifice friends and activities to stay with their dad."

Nancy Law, vice president of Client Programs of the National MS Society, said this is the third year that scholarships have been awarded to students nationwide. More than 750 students applied for the $1,000 to $3,000 scholarships and 88 were awarded, she said.

"We know so many families are struggling to cope with the financial impact of MS," said Law in a prepared statement. "We know situations where kids have deferred college acceptance to work and save, young people who can't bring themselves to ask their parents to co-sign student loans, even situations where a scholarship has been turned down for lack of funds for all the non-tuition expenses. This is why we are fighting this frequent side effect of MS — because of MS shouldn't stand in the way of an education."

Hilary is registered at Weber State University this year, and said she hopes nursing will be a springboard to even greater accomplishments in a field like genetics.

Scott listens intently to his daughter as she describes her plans for the future, and wonders out loud how much of her life he'll be involved in. His MS has progressed so quickly that he knows the future is impossible to predict.

Julie ponders the future, too, as the love of her life struggles to stay active.

"I've had to take over everything. That's been very frustrating, and very hard," she said. "I've told our kids that being 'busy' is no longer a part of our language. That's a four-letter word in our house. You just don't realize how much a few minutes really matter."

For more information about the National Multiple Sclerosis Society Utah State Chapter call 1-800-344-4867, or visit www.fightmsutah.org.


E-mail: nperkins@desnews.com