Knight with MS hopes to bring attention to the disease

Andy Airriess

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Dan Castelli has been active in the Utah Knights of Columbus for many years. Courtesy photo/Andy Airriess

OGDEN — Dan Castelli is a husband and father who has been active in the Utah Knights of Columbus for many years. He serves as the Grand Knight for his current council at Saint James the Just Parish in Ogden and previously was district deputy for the Utah County councils. He is an extraordinary minister of the Holy Eucharist and a lector, as well as the parish’s maintenance supervisor. He is employed by the Standard Examiner and enjoys hiking in his free time. One day last year he and his family spent almost eight hours on the trails during a visit to Moab.

Castelli also is an honoree for the April 26 Walk for MS at the Gateway in Salt Lake City.

"If you’ve ever met Dan Castelli, you’d never, ever know that he has MS," said Robert Masse, Jr., State Deputy for the Utah Knights of Columbus. "A lot people who have MS can disguise the symptoms, but a lot of patients who have multiple sclerosis – it’s just a debilitating disease and they end up with uncontrollable shakes … or lose the ability to put one foot in front of the other."

The MS Walk raises funds to help people in Utah who have the disease, Masse said; the Knights of Columbus have participated in the walk for five years.

"It’s a community event that we felt we should be a part of because so many of our families are affected by the disease," said Masse, whose brother suffers from a form of MS. "It’s hard. It really is hard to see people with MS get through life. Hopefully we can find a way to better an individual’s quality of life."

Castelli was first diagnosed with MS in 1991, when he was in his 30s and living in California. One morning he woke up and couldn’t see out of his right eye. He was diagnosed with optic neuritis, a form of multiple sclerosis. His vision eventually returned, which is fairly common among those who have a single episode of optic neuritis, according to the Mayo Clinic website.

However, Castelli had other MS symptoms, including episodes during which his body from the waist down became numb. He had one particularly bad occurrence, but then his symptoms disappeared. For the next 14 years, he continued to raise his family. He moved to Utah, divorced, remarried. For a time he stopped attending Mass regularly.

"I never lost my faith. … I just got lazy," he said. Then his uncle died, and "when I came back [to church] I haven’t turned back since."

His MS stayed in remission until 2005. Tests found a 1-centimeter lesion in his spine at the neck, but he continues to show few symptoms. Doctors tell him his MS is in a state called repetitive remission. There is no cure for the disease. Castelli said he looked into medication, but even with insurance it would cost him $900 a month.

"I try not to think about [having MS,]" he said. "I still get numbness and that, but not like I used to."

Being involved with his parish and a member of the Knights of Columbus helps him cope, he said, particularly when he volunteers to help with the Special Olympics. "I look at them, and there but for the – " he said, trailing off. "I may have this, but I can work through it. It’s tougher for them, but I try to help them as much as I can."

He agreed to be an honoree for the MS walk because he wanted to bring attention to the fact that many people with the disease live regular lives. "Not all of us are in wheelchairs or crutches or things like that," he said, but added, "I wish people knew how debilitating it is."

WHAT: MS Walk

WHEN: Saturday, April 26, 8 a.m. to noon; the walk begins at 10 a.m.

WHERE: The Gateway, 90 South 400 West, Salt Lake City

For information, visit http://walkutu.nationalmssociety.org/site/TR?fr_id=23100&pg=entry.