CHICAGO (MCT) — There’s a common saying among people who have Multiple Sclerosis: If you’ve met one person with MS, you’ve met one person with MS.
Each person’s experience with the disease — from the age they got it to the way it has affected their body — is so unique, MS can’t be generalized. For some, MS simply leaves them feeling tired. Others are plagued by periodic difficulties in walking or thinking. Still others may lose permanent use of their arms and legs and become paralyzed.
Multiple Sclerosis, a degenerative disease that attacks the brain and spinal cord, can be as emotionally destructive as it can be physically damaging, said Gloria Crews-McAdoo, who started the “I CAN” MS support group in Chicago after her son was diagnosed with the disease.
“It is the uncertainty of MS,” Crews-McAdoo said. “If you don’t know what’s going to happen to you from one day to the next it is very frightening.”
While the National Multiple Sclerosis Society estimates that about 400,000 Americans have the disease, MS has gained more attention this year because Republican presidential nominee Mitt Romney’s wife, Ann, has it. Diagnosed with MS in 1998, Ann Romney in recent months has opened up about her battles with fatigue, depression and mobility, suggesting her experience may help shape her goals as first lady should her husband be elected.
The stories of those living with MS in the Chicago area show the many paths the disease can take and the varied ways people have chosen to navigate its uncharted course.
Meghan Melone
On Tuesday, Thursday and Saturday nights, Meghan Melone removes a syringe from the refrigerator, waits for the liquid inside to warm and then injects it into her body.
The drug, known as Rebif, is just one of many designed to help slow the progression of MS.
At times, it has left Melone, 22, fighting headaches and chills, but until this spring it seemed to be working.
“I felt awesome, I was running, you would never have even thought I had MS,” said Melone on a recent afternoon at her Elk Grove Village home.
In October 2004, Melone was trick-or-treating when she noticed her feet were numb. During the following week, while she was trying out for her high school varsity basketball team, the feeling crept up her legs like rising water. By Friday, an emergency room doctor told Melone and her family that it was likely MS.
“I’m 14 years old on a Friday night in the ER and I’m like, ‘No, you have the wrong person,’ ” Melone said.
She started the tri-weekly injections. Though she remained on the bench for most of her basketball career, she was able to play soccer and volleyball. Four years later, Melone enrolled in a college in Indiana.
But in April, the familiar numbness returned. This time, she also had problems thinking.
Her parents rushed to her side, driving Melone to her student teaching job, cooking and helping her in and out of a wheelchair that had belonged to her grandfather before he died.
Even though Melone made a full recovery, her parents remain shaken by the latest relapse.
“It’s your job as parents to protect your kids,” said Melone’s mother, Betty. “We’re supposed to make sure these things don’t happen to them.”
The disease, however, has lent their daughter a maturity beyond her youth.
Melone graduated in May and is now focused on the future — a career teaching Spanish and hopefully, one day, a family of her own.
In the meantime, she tries to move for at least 30 minutes every day. She runs, she kick boxes, she plays soccer whenever she can.
“I try not to take anything for granted,” Melone said.
Eric Powell
If people stare when Eric Powell takes his children out in Chicago, he tries to make his kids laugh.
“I’ll say something like, ‘It’s because they can’t believe you’re with such a good-looking guy,’ ” Powell said last month, sitting in his Near North Side apartment.
Powell, 45, was diagnosed with MS around 1995 after having blurred vision and numbness in one leg. He had mild symptoms for nearly 10 years, in which time he married and had three children. But about six years ago, Powell said he started losing the ability to walk.
Powell used a cane and then an arm crutch and finally a wheelchair. He and his wife divorced, a split that Powell blames, in part, on financial problems and his stubborn refusal to accept help as the disease grew worse.
Now, Powell can no longer move his left arm or leg and must use a motorized scooter, which he said sometimes creates a spectacle of sorts when he is chaperoning his two young daughters and son.
“If it’s raining, for instance,” Powell said. “I’ll have a big golf umbrella and I’ll have one of them on the foot plate and the other two on each knee.”
To get by one handed, Powell uses elastic shoelaces, a button threader and a special cutting board that has a vice for holding food. When golfing, he rides in a chair that can position him over the ball. If he wants to sail, there is also a local group that runs an adapted boat he can help operate.
Beyond mobility, Powell struggles to speak for long periods of time and multi-task. He has received disability payments since about 2005.
Some of Powell’s most difficult moments have been when his kids have had to help him, especially if he falls out of his wheelchair. But Powell believes his struggles with MS have also made him a better father in certain ways.
He is not as quick to answer his cellphone, for instance, when his kids are visiting. And he tries to talk to them more about life and the mistakes he has made that they should avoid.
“MS definitely puts things into perspective big time,” Powell said.
Beverly Johnson
Beverly Johnson dreads summer.
The heat seeps into her body, tweaking the nerves that cross her brain and wind down her spinal column.
So during hot spells, Johnson, 64, relaxes in her air conditioned Southside home. She devours dozens of mystery and romance novels on her Kindle. She waits until evening to water her Impatiens and Hydrangea.
“I have found out that two things really trigger me to not do as well: heat and stress,” Johnson said on a recent night, sitting beside her husband on their backyard deck. “So I really try to do everything I can to take care of myself.”
In 1993, Johnson was driving to the post office when her fingertips felt numb. She later noticed her grip had weakened.
Doctors diagnosed Johnson with MS, but she initially ignored their treatment recommendations because her symptoms remained so mild.
Despite residual tingling in her hands and feet, Johnson continued to live as she always had until a family gathering in the summer of 2002 when the extreme heat gave her such bad vertigo she could barely walk.
For days after, Johnson used a walker and then, eventually, affixed a rubber end to one of the African walking sticks she collects to turn it into a cane.
For the first time, Johnson said she realized the seriousness of MS.
She retired several months early and started working out. She began injecting herself daily with a drug meant to slow the disease. About two years ago, Johnson also applied for a handicap placard for her vehicle.
When it arrived in the mail — the word “permanent” inscribed on its shiny, blue plastic — she cried.
Yet Johnson said she is grateful, especially on hot days, that she has it. Those types of uncomfortable decisions, Johnson has tried to remind herself in recent years, are part of taking as much control of life as possible.
“You can’t let fear keep you from living the best quality of life you can,” she said.
David Sackett
Even if he must limp, David Sackett walks.
At work, he chooses the stairs. At home, he retrieves the newspaper from the front porch.
While seemingly small, these simple actions represent what Sackett, 52, still can do.
“It gets harder and harder every day,” said Sackett, sitting in his Oswego home with his wife on a recent weekend. “So I force myself to do it.”
Sackett, who left a corporate sales job about 10 years ago for a second career as a firefighter and paramedic, was diagnosed in 2010 with progressive MS after he noticed that his right leg felt “floppy.”
Most people who are diagnosed with MS have the relapsing/remitting kind, which means they may be asymptomatic for years between flare-ups. In Sackett’s case, however, his mobility problems reflect permanent nerve damage that will only get worse.
“That is why we say that at the end of every day you find the positive because you never know what the next day is going to be like,” said Sackett’s wife, Pieper.
Adjustments have been inevitable.
Last year, Sackett traded in his stick shift truck for an automatic. In December, he held the ladder while his son strung Christmas lights around the house. And this January, he moved to a desk job at the Oswego Fire Protection District because he could no longer handle the physical demands of firefighting.
“It was the hardest day of my life because I love my job, I love helping people,” Sackett said.
Since the diagnosis, Sackett has increasingly lost strength and feeling in his right leg and hand. Several weeks ago he also broke his right foot because he couldn’t tell how he was stepping.
But Sackett said he takes pleasure in his new assignment helping the department with fire prevention and education. The regular hours give him more time to spend with his wife, son, daughter and granddaughter. And, almost every day, he still finds time to visit the younger firefighters to give them tips on technique.
“That is what I can do, and I try to focus on that,” Sackett said.
