Multiple sclerosis slows down, but doesn't stop, a person from living
March 30, 2003
By Ruth Ann Replogle, Staff Writer
Enid News & Eagle
Elda Jones of Alva noticed something was physically wrong 20 years ago when she began to have double vision and inflammation of the optic nerve.
By 1991, the Northwestern Oklahoma State University health and wellness professor and swim instructor couldn't ignore the double vision anymore.
She underwent magnetic resonance imaging (MRI), but the test was inconclusive. She had another MRI in 1993, and this time the physician diagnosed her with multiple sclerosis, or MS.
A chronic and often disabling disease that attacks the central nervous system, MS has unpredictable physical and emotional effects. Ever changing, it is difficult to pinpoint and a person may experience numerous symptoms for years before being diagnosed.
In fact, the symptoms may come and go, and can indicate any number of possible disorders. Spinal taps and MRI aren't always conclusive.
Jones' sister, Janet Cordell, is a registered nurse at Enid Family Medicine Clinic and has served as community chair for the MS Walk.
"It was a disease of exclusion," she said. In the past, doctors would eliminate the idea a person had other diseases through trial and error before concluding a person had multiple sclerosis.
MS generally appears between the ages of 20 and 50. Twice as many women as men have MS.
The progress, severity and specific symptoms of MS in any one person cannot be predicted, according to the National Multiple Sclerosis Society. Today, more than 10,000 Oklahomans are affected by MS.
While there is no known cause or cure, advances in medicine and therapy can lessen some symptoms.
For Jones and other like her, symptoms run the gamut - balance problems, vision or speech impairment, numbness, hot flashes, fatigue, paralysis or loss of motor skills.
Not long after her diagnosis, Jones walked with a cane and could still instruct from the sidelines at the swimming pool and in aerobics classes.
The cane, she said, not only helped her stand, but also gave her protection and showed people she wasn't drunk and she needed to park in handicap parking zones.
Jones transferred from a cane to a manual wheelchair, but her strength was slowly slipping away, so she traded in for an electric wheelchair.
"It was a toss up to keep the strength up versus using too much energy," Cordell said.
Jones had to adjust her home to make it wheelchair accessible, and she purchased $10,000 worth of equipment to make her van wheelchair accessible, too.
Speaking of which, her greatest pet peeve is parking issues. Many parking lots have van accessible handicap parking with blue lines that allow for side lift unloading.
"My lift comes down and I need the space of the blue strips," she said.
Unfortunately, she said, people abuse the right to utilize parking spaces by illegally parking on the blue lines or illegally parking in a handicap zone.
People often say, "I'm just going to run in for a few minutes," Jones said. She said just because someone who needs handicap parking hasn't parked there yet, doesn't mean they won't need it during those few minutes.
One elderly lady told her once, when she parked on the blue lines, therefore blocking Jones from unloading her wheelchair, "I'm 95 and I deserve this."
Jones replied, "I'm 48 and I don't deserve this."
Another time, a student at Northwestern Oklahoma State University had only planned to go in for a few minutes so she parked in the van-accessible handicap parking space.
Jones drove up and, because there was no other wheelchair ramp in the area, she parked behind the car. The young woman was forced to wait until Jones returned to her van after running a few errands of her own.
Ten years after her official diagnosis with MS, Jones' health has declined more and she doesn't exercise like she wishes she could. She admitted sometimes her spirits sag.
"I'd been active. That was one of my emotional downfalls," Jones said. "I have learned patience. I've had to ... I can't say slow down."
She sighed as she searched for the right words to say.
"I'm extremely independent," she said.
"She's had to learn to ask other people for help," Cordell added.
Jones has physical therapy twice a week and she has hired someone to help with daily living skills and housekeeping.
However, Jones refuses to give in and lie around the house all day. She has chosen to remain active despite any hindrances.
She works with special needs children twice a week in the Alva Public Schools.
"I have a disability, but I'm not disabled," Jones said. She said adults stare, but seem afraid of people with disabilities and often try to keep their children from approaching.
"She's always encouraged little kids to come up and touch the chair," Cordell said.
To help spread awareness and to raise money for research, advocacy and education about multiple sclerosis, Jones joined the MS Walk eight years ago in Tulsa.
She came home and challenged her family to join the next year. Nineteen relatives agreed to walk for the cause.
Jones and Cordell decided there should be a route option in Enid, rather than having to go to Tulsa or Oklahoma City for the MS Walk.
"If they can do that in Tulsa, we can do it in Enid," Cordell said.
So they brought the MS Walk to Enid in 1997.
"Lots of people have said to me, 'I have a relative or a friend with
MS. I didn't know what it was.' Everyone that reads (this) article can
associate with it," Jones said.
© Enid News & Eagle 2003