Northwest Arkansas Democrat-Gazette
Legacy spurs devotion to surviving PALS
Arkansan Susie Larson was off her game in tennis. She was missing the neon green balls as they came over the net, which was unusual for her. Her grip on the racket didn’t seem to be so strong.
After a trip to the Mayo Clinic, Larson was diagnosed with ALS (amyotrophic lateral sclerosis), which most people know as Lou Gehrig’s disease. It starts in the nervous system and affects physical function, beginning typically with the feet and legs and moving up through the body.
As Larson was learning more about ALS and what she should prepare for — a loss of functioning ability — she realized there were next to no resources for ALS patients in Arkansas.
“There was no awareness here,” says Jennifer Necessary, executive director of ALS Arkansas chapter. “Nobody knew anything about it. Her request to her friends was to please, please do something to bring awareness so the people of Arkansas know.”
Susie’s five closest friends banded together to make her final years more comfortable and,
at her request, began the ALS Arkansas chapter by forming the first Walk to Defeat ALS in 2005. They attended the same event in Memphis first, met with representatives from the national chapter and organized the huge event in just six weeks — a surprise to the more seasoned organizers.
Susie’s Angels, as they called themselves, expected maybe 70 to attend and to raise something like $5,000 with the help of their husbands who agreed to sponsor. They were blown away when the event drew 300 people, $30,000 and brought many people living with ALS, their family and supporters together.
ALS had a larger effect on Arkansas than they’d ever imagined.
“This chapter is in existence because Susie wanted people to have awareness,” Necessary says. “The girls stayed true to their commitment for making a difference. We’ve grown so much [since.]”
Jennifer Necessary joined the organization as executive director after retiring from a long career at Wal-Mart, where her colleagues
had served on the board of directors. She now heads that board, which has 21 members from a variety of companies in Northwest Arkansas such as 3M, General Mills and Wal-Mart and leverages their volunteerism to provide services to Arkansans with ALS.
“Our mission as an association is very compassionate care for these PALS (persons with ALS) and their families,” she says. “We want to keep them in their homes if at all possible, where they’re comfortable surrounded by their loved ones and caregivers.”
The average cost of receiving that care in-home is in the realm of $250,000 a year. The disease plays out differently for each person, but a person can live with ALS an average of two to five years past diagnosis. Staring at a potential million dollar price tag is tough for anyone, of course, and friends and families want the best for them.
Arkansas ALS provides helpful devices and equipment, grants and patient services to make PALS’ lives easier. It’s Necessary’s job to help keep the ALS loan closets full, decide what the best items for new PALS might be and to keep in touch with them as their needs change.
The organization has two loan closets, one in Northwest Arkansas and one in Little Rock, to make sure that the 115 PALS they work with have everything they need. Depending on the stage of progression, a PAL could receive a toilet riser or shower bench to make bathroom trips safer; an assortment of walkers and wheelchairs — the most expensive being a $65,000 investment; as well as breathing equipment.
Newest to the closet are two types of speaking devices. Necessary was overjoyed to secure 10 of them, she says, because the inability to communicate is one of the greatest indignities PALS face.
“We teach them to use these devices early so that
they have the capability to communicate with them [easily],” Necessary says, explaining that some involve a keyboard for the PAL to type what he wants to say. Once typing becomes difficult, there’s an alternative. “When they get to the point to where they can’t do it, we have some little boxes that will project their voice for them.”
One of the PALS, a woman from Springdale, recently used the device on a day when Necessary helped her do something extraordinary. For the first time in her son’s life, she was able to attend his basketball game to cheer him on. The PAL was diagnosed with ALS while pregnant with him and in 10 years had no means to make it to events that other parents take for granted.
“Sharing the lives of your children is natural … but in the lives of those with ALS, something simple can be nearly impossible,” Necessary said in a video about ALS. “We got there and he looked across the court, mesmerized. Because of the speaking device we suited her with, she’s able to tell him she loves him and … help him with his homework at night.”