This Saturday, for the fifth consecutive year, Corinne Brown and her extensive network of friends and family members will participate in the Mankato Walk to Defeat ALS. After years of finishing in second or third place, their team collected more money than any other--more than $5,000--in 2013.
Corinne and her husband, Bill, were married in 2007. They first met in Hanska, where she's from originally, when his band--he’s an Elvis Presley impersonator--performed at her brother’s birthday party. Six weeks later, “Attitude” was back in Hanska to perform at another birthday party, and the two reconnected; after that, “the rest was history,” he said.
Throughout 2009, Corinne Brown’s doctors suspected she might have Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig’s Disease, and she was officially diagnosed in January 2010. Before the effects of ALS forced her to retire, Brown was director of the Hanska Community Library from 2008-2011.
ALS is a neurological disease that causes muscle weakness and impacts physical function, according to the Mayo Clinic. A type of motor neuron disease, it causes nerve cells to gradually break down and die. ALS often begins with muscle twitching and weakness in an arm or leg, or sometimes with slurring of speech.
Eventually, ALS can affect one’s ability to control the muscles needed to move, speak, eat and breathe, the Mayo Clinic noted. ALS can't be cured, and it eventually leads to death.
“We wept when we found out,” Bill Brown said. “ALS is always diagnosed by what it is not.”
Her first symptom was when, on a vacation in Colorado, her right leg went numb as she ran across a street, and she had to drag it behind her, she said. “As soon as I started limping, I knew it was serious. Our friends and our support people keep us sane.”
“I try not to think ahead, because I’d go crazy,” she added. “But, sometime you have to.”
Even when they do something fun, like riding motorcycles in the Ozarks last summer, the disease--and what it means--is an omnipresent spectre in their lives.
“It’s nice to feel normal again for a little while, but it’s always there,” he said. “It’s a devastating illness, and it taints everything you do.”
Riding on airplanes is almost out-of-the-question, and even trips to local restaurants can be daunting, she said. “My legs decide when they want to move and when they don’t.”
Corinne Brown now uses a motorized scooter indoors and outdoors--including in the ALS Walk. Their home is now equipped with a new deck and a ramp for easier access. She’s still able to walk short distances, albeit with reliance on a walker, and her husband makes sure she does walk every day.
In addition, multiple supporters show up throughout the day to pitch in with care. They also visit a monthly support group in Mankato.
“They say misery loves company, but I just feel sad when a new couple comes in,” Bill Brown said, to which his wife added, “They’re dying so fast.”
Doctors say her form of ALS is slow-moving, and, the farther away from the brain the disease starts, the better it is for a patient, he said. For her, it started in her feet.
Those who wish to join Brown’s crusade can visit her personal page on the event’s website--http://webmn.alsa.org/goto/corinnebrown. accordng to The Hanska Herald.
For still unknown reasons, ALS is more prevalent in veterans--regardless of the era they served--Bill Brown said. Consequently, the government has begun devoting munificent sums of money and resources into ALS research, and that focus has people like Bill and Corinne Brown hopeful that a cure could be in sight.
“This walk does great things for patients and their families,” he said. “The researchers are very dedicated and working very hard, and the ALS organization is (made up of) some of the finest people in the world--so kind, caring, and compassionate.”
“I spend a half-hour in prayer every day,” he added. “This is a journey we didn’t want to go on.”
Julie Schiller, St. James, has a sister, Susan Barnes, who also has ALS. Schiller, Barnes, and a group of 25-30 others have participated in the Mankato walk for the past handful of years, and they plan to do so again this year.
Barnes was diagnosed over five years ago, and the disease had progressed rapidly, Schiller said. “She can’t do anything on her own.”
Barnes is confined to a wheelchair, she can’t feed herself, she’s outfitted with a feeding tube, and “her speech is very hard to understand,” Schiller said. She retains the ability to swallow, however, and she still lives at home. Her husband, Terry, is her primary caregiver, and “she has people come in every morning to get her ready for the day.”
Barnes also thoroughly enjoys getting outside, so she has a wheelchair-accessible van, Schiller said. “We take her out as much as we can--she’d like it to be every day.”
Schiller sees her sister, who lives in Mankato, weekly, and the walk in Mankato is always an annual highlight, she said. They even have T-shirts titled “Sue’s Violets.” The family also participates in the same support group as Bill and Corinne Brown.
Though people interested in joining the walk can look up more information and even register online, Schiller said one can also just show up and walk the day of the event. “It’s a lot of fun, and we keep it upbeat and positive; the walk is only about three miles total.”
The walk is at 10 a.m., and sign-up begins at 8:30 a.m.
The full story appeared in the April 24 print edition of the St. James Plaindealer.