Nerby takes life one day at a timeWhen people meet Erin Nerby, see her in the grocery store or on the softball field, they have no idea how challenging her life is. She is one of over 400,000 people in America living with multiple sclerosis.
By: Margaret Ontl, Hudson Star-Observer
When people meet Erin Nerby, see her in the grocery store or on the softball field, they have no idea how challenging her life is.
She is one of over 400,000 people in America living with multiple sclerosis.
As a Hudson High School student she played softball, loved pottery classes and worked with special-needs students, but her life changed at the age of 17 when she had an ischemic stroke.
Brain scans at the time identified one lesion, but since there was only one, a diagnosis of multiple sclerosis could not be made.
After graduating in 1998, Erin went to work at Merrick Inc. with disabled adults and in 1999 completed her certified nursing assistant certificate at WITC. She went to work at Hudson Hospital in the OB department with plans to get her degree in nursing and become an RN.
She started dating Jim Nerby, a 1995 HHS grad, when she was 16, and their first daughter was born in 2000.
“I worked at Hudson until I got sick,” said Erin. “That was August 2000. I got super dizzy and I couldn’t pick up my daughter.” New scans showed Erin had four big lesions on the left side of her brain. After a week in St. John’s Hospital, the diagnosis was definite — she had multiple sclerosis. She was partially paralyzed on her right side and lost some of her vision.
MS is a chronic, often disabling disease that attacks the central nervous system — brain, spinal cord and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. It is commonly diagnosed in people between the ages of 20 and 40 and more frequently in women. Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.
Soon after her diagnosis, Erin got an appointment at The Schapiro Center for Multiple Sclerosis in Minneapolis and found she had the relapsing-remitting form of MS. What separates this from other forms of MS are the temporary symptom flare-ups called “exacerbations.” They can last from one to three months with remission occurring in between.
“Everyone with MS is different; the flare-ups can result in stroke-like symptoms,” said Erin.
So it was on her wedding day, Oct. 14, 2000, to her longtime friend and partner Jim Nerby, that Erin was in the midst of a flare-up. She doesn’t like to talk about it and admits it was one of the worst days of her life.
Released from the hospital the morning of her wedding, Erin walked down the aisle with the aid of her father, Ron Wallin, and brother, Nick. By 5:30 p.m., Erin was home, and Monday morning readmitted to the hospital.
“I missed most of my wedding,” said Erin, who missed her daughter’s first Halloween, while she was learning how to feed herself, write and do normal daily activities again.
“Everything that had to do with motor skills I had to relearn,” said Erin. “My doctor said you are going to walk out of here and I did with only a cane.”
Erin’s mom, Sharon Lynum, took a leave of absence from work and her dad helped out with finances while she recovered from the effects of the flare-up. A family meeting resulted in Erin deciding to stay home to raise her daughters, giving up the idea of completing her RN degree since stress is a major factor in MS.
The couple moved to New Richmond in 2005 and have a second daughter, Abby. Jim is a supervisor at GM in St. Croix Business Park.
“The only thing that has gotten me through this is my family and my friends,” said Erin. “If I have a bad day, I call them and cry, or they come over and help me.”
In the years since, check-ups have been spread out from every two months to four months and then every six months. She gives herself injections of Betaseron every other day, which allows her life to be “normal.”
“One of the main side effects of the injections are flu-like symptoms,” said Erin. “But it is worth it because it has turned my life around.” It is also a drug that insurance companies don’t like to cover, according to Erin. Without insurance coverage, the monthly supply of Betaseron would be $3,000. Office visits are in the range of $600 unless testing is required.
“I had a bad summer,” said Erin of 2008. In November, tests revealed why — the MS lesions had spread to her spinal cord.
“Every time I have a flare-up it’s different. That’s why it is so scary. You just never know.”
With the new diagnosis and mounting medical debt, Erin’s family and friends have once again stepped up to the plate, planning a fund-raiser for Jan. 24 at the Village Inn in North Hudson.
“It is totally amazing how the community comes together and helps,” said Sally Bauer, Erin’s mother-in-law. “We are so appreciative of every business and individual who has helped and donated to make the fund-raiser a success.”
“It is amazing to me; words cannot express how thankful I am,” said Erin.
“100 percent of the donations received will be used to defray the insurmountable medical costs that insurance doesn’t cover,” said Bauer.
“I have MS but I won’t let it have me,” said Erin. “I fight each day. There is still a lot of hope with stem cell research and there are 11 new drugs being tested. Even if only a few make it to market that’s still reason to hope.”
“Each day I wake up, if my hand moves and my foot moves, I know it’s going to be a good day,” said Erin, who still plays softball and goes to the gym. “There are a lot of people who have more serious problems. You just can’t let it get you down.”
For more information on MS, visit www.msassociation.org or www.nationalmssociety.org or call (800) 582-5296.
•When: Saturday, Jan. 24
•Where: Village Inn, North Hudson
•Time: Noon to 4 p.m.
•Food: Adults $5 and children $3; includes pork sandwich, au gratin potatoes, salad and dessert. Food will be available all afternoon.
•Music: The Porch Dogs.
•General raffle prizes: Tickets, $5 each or three for $10, at the door. Items include gift cards from Mama Maria’s, Wal-Mart, Chili’s and Applebee’s; also sports memorabilia, Timberwolves tickets and signed prints and much more. Drawing is at 4 p.m. — need not be present to win.
•Grand prize raffle: $1,500 travel voucher. Tickets are $5 each or five for $20, available now at Village Inn, Mudds & Sudds, Willow River Inn and GB Curlys. Tickets on sale until time of the drawing, 4:30 p.m. – need not be present to win.
•Live auction: 2 p.m., for a fishing trip to Bayfield, and other items.
•Grab bags for kids, $1 each.
•Cash donations can be sent directly to: Bremer Bank, Attn: Erin Nerby Benefit, 532 S. Knowles Ave., New Richmond WI 54017.