In July 2011, the Hulin family’s life forever changed when Erin Hulin Hall at age 21 contracted multiple sclerosis (MS).
Her symptoms started on a small scale.
“I had tingling that started in my feet,” Erin said. “After three consecutive days that I had this tingling that I went to sleep with and woke up with, I went to the doctor.”
Not a family to sit quietly and hope for the best, the Hulins, parishioners of Divine Mercy Parish in Kenner, visited a neurologist, got Hall on medication and then became heavily involved in the Multiple Sclerosis Society.
Roi-Lynne Hulin, Hall’s mother, is on the Government Relations Board and an MS district activist leader, and Colin Hulin, Hall’s father, is a Louisiana Leadership Council member of the National MS Society and has served on committees for the MS Society’s South Central Region. Colin Hulin also is a corporate sponsor through Peoples Health, where he is chief information officer and lobbies politicians. Hall’s husband Wesley and sister Lauren also have participated in the MS Bike and MS Walk fundraisers.
Since Hall’s diagnosis with relapsing-remitting multiple sclerosis, the Hulins have raised more than $50,000 through participation in the annual MS Walk and MS Bike and have lobbied state and national representatives and senators to keep funding channels open for MS research.
“The Hulin family is dedicated to the fundraising efforts each year, and Roi-Lynne is especially involved in government advocacy work, meeting with state and federal legislators to push priorities important to people with MS in Louisiana,” said Andrew Baer, senior manager for governmental relations for the national MS Society in Louisiana, Arkansas, Mississippi and Florida.
Baer said Roi-Lynne Hulin’s efforts in 2017 contributed to the Louisiana Legislature’s passage of the home modification tax credit for modifications to a home to support a disability.
Will be honored
For their dedication and commitment over the past seven years, the Hulins were selected as the 2018 MS “Family On the Move” and will be honored with a plaque May 8 at the Multiple Sclerosis On the Move Luncheon New Orleans.
Their work and that of other activists have produced positive progress in the research and drugs that treat MS.
“I’ve seen improvement in the treatment for MS,” Roi-Lynne Hulin said.
Hall has been on three drugs. Rebif, an injectable medicine, worked for 1 1/2 years, and then she used Tysabri for four years. She stopped medication completely when her MS went into remission while she was pregnant with her 5-month-old daughter Natalie. She tried a new drug in January that didn’t work and returned to Tysabri, which has kept the symptoms mostly at bay.
Hall says she has some no-symptom days, but a relapse of symptoms such as leg tingling, fatigue and eyesight problems can come out of the blue. Her worst episode in 2013 resulted in temporary blindness from what is called optic neuritis.
“I woke up and my right eye was gray. That was terrifying,” she said. A five-day steroid treatment helped her vision return. “I pray for things like the ability to see and pray and touch – to have all my senses intact. Because you just don’t know when something might happen.”
Sees life differently
The disease has been life-changing for Hall in a variety of ways.
“I have a deeper appreciation for life now,” she said. “Things that most people would expect to work in their body, sometimes don’t work with MS. Living with MS and having things happen, makes a good day feel good. I’ve also formed relationships with people that I wouldn’t probably have met through fundraising events and advocacy.”
Hall has become a role model for MS and is proud to have shared her experience at the 2014 National MS Public Policy Conference in Washington, D.C. She also rode in MS Bike Louisiana in 2014, 2015 and 2016 and serves as an advocate for the disabled. She knows she’s lucky.
“I live a normal life – I can walk and talk,” she said, “so, MS is kind of invisible. But I meet people on the extreme opposite who can’t walk, who have trouble doing simple tasks like getting food in their mouth with a fork. Having that perspective – knowing I have the same disease but we don’t share the same symptoms – makes me feel like I have an obligation to do advocacy work on behalf of those who are disabled and don’t have the same quality of life.”
Hall said keeping a positive attitude about the challenges reduces stress that can exacerbate MS.
“I’ve noticed when I am in a stressful situation, my symptoms are worse. So, I’ve learned not to get stressed out about little things because they don’t matter. It’s more important for me to stay healthy. And, my husband Wesley is a tremendous support. I don’t know what I would do without him. He is good at recognizing when I am stressed out and good at calming me down, so bad things don’t happen.”
Hall said her indomitable faith and family have kept her strong.
“I think faith gives me the motivation to know that everything will be OK,” she said. “I need to trust in God and to know whatever he has in store for me is something I can handle. … When things go wrong, I know it’s part of his will – I may not know why – but I just have to deal with it accordingly.”
Hall advises others with MS to trust that things are not going to be bad all the time.
“You are still alive,” she said. “There is life ahead of you, even with a disability. People can still have a good life with a chronic condition.”
Christine Bordelon can be reached at firstname.lastname@example.org.