Two Emporians, and others like them, have a personal stake in the success of next week’s Walk MS event at Emporia Middle School.
Angela Hadden and Karen Cope, their families and friends, hope that the money raised by the walk here and other events across the country will bring researchers closer to finding a cure for Multiple Sclerosis.
The National MS Society describes MS as a chronic, often disabling disease that attacks the central nervous system — brain, spinal cord and optic nerves. Symptoms may be mild, such as having numbness in the limbs, or severe, with paralysis or loss of vision. Its progress, severity and symptoms are unpredictable and vary from person to person. Diagnosis times also vary from patient to patient.
Medications ease symptoms for some, or put the disease in remission or a series of remissions and relapses; other cases do not respond well to treatment and the disease progresses until the patient’s mobility is limited to a wheelchair or bed.
Continued research to find better treatments or a cure will be financed by proceeds from the walks.
Check-in for the Emporia event will begin at 9 a.m. April 25, with the walk scheduled to start at 10 a.m. Participants, sponsors, and donors are needed to support the effort. More information may be had by calling (800) 344-4867 and pressing 2, or by e-mailing event coordinator Jillain Foreman at eventsek@nmsskc.org.
Hadden and Cope agreed to talk about their diagnoses and the ways in which MS has affected their lives and the lives of those around them.
Karen Cope
For Cope, MS arrived almost overnight.
Her diagnosis came about six months ago and she is still adjusting to the changes that dropped so abruptly into her and her family’s lives.
“I woke up on a Wednesday and started tripping, and I thought that was weird,” Cope said.
She’d experienced a bout with vertigo a few months before and thought perhaps the tripping was related to that episode. She’d also had a numb feeling around her chin off and on for a while. It was easy to attribute that and her fatigue to the stress of a busy life.
Cope manages Maplewood-Memorial Lawn Cemetery and the Charter Funeral Emporia Chapel. She and husband Jeff are parents of three children — Lydia, 24; Sadie, 15; and Chloe, 9 — and are active in the Hope Community Church, their children’s education and activities, and the Special Olympics Polar Bear Plunge, among other interests.
When the symptoms worsened and her left side refused to function properly, the Copes realized something besides stress was likely causing her problems.
They quickly went to their family doctor, Sam Tovar.
“Initially, he said, ‘Your symptoms don’t make any sense,’” Cope said.
He performed strength tests that revealed a weakness that, coupled with other incongruities, needed to be investigated.
“My right foot I could tap consistently; my left foot was inconsistent,” she said.
Tovar sent Cope out of town to a neurologist for tests. When they met to hear the results, the doctor walked in the treatment room and told the couple that the electroencephalogram looked fine.
Then he flipped through a sheaf of papers he’d carried in with him.
“He goes, ‘Oh, no!’ And he flips the papers and he flips the papers again. ‘This is your MRI,’” she recalled the doctor’s saying. “’You have MS.’ I look at Jeff; Jeff looks at me, and we both have tears running out of our eyes.”
As she lay on a hospital table later, undergoing a spinal tap to complete health insurance diagnosis requirements, she wondered aloud how she could seem to be fine one day and have MS the next. Her body, after lying in one position so long for the procedure, gave its own response when the technician told Cope the test was over and she could get off the table.
“I can’t get down right now,” she remembered responding. “My left leg isn’t working.”
She’d gotten the MS diagnosis on Oct. 7, 2008, two weeks after the tripping episode.
“Those first two months were rough,” Jeff Cope said of the disease’s direct effect on his wife and the upheaval it caused in their lives.
In hindsight, she recognized that something had been overtaking her and she’d been too busy to worry about.
“There were things I couldn’t do,” she said. “I couldn’t open a jar. I couldn’t water ski. You think, oh, I’m just getting old. … You just keep going.”
Doctors had found old lesions that were no longer active on her nerves, along with the new ones that were causing the current problems.
After about a month of getting insurance paperwork completed and approved so she could be treated, Cope began a regimen of Rebif injections three times a week, with Jeff holding primary responsibility for giving the shots.
“Does that make me a phlebotomist?” Jeff Cope asked, teasing his wife as they sat for an interview this week.
“It makes you my hero,” she replied.
Daughter Lydia Cope and friend Heidi Davis also have been trained and are called on to administer the shots.
The Rebif seems to be helping, despite the side effects that include night sweats, flu-like body aches and fevers. She takes the shots at night, to try to sleep through the discomfort.
“It’s better,” she said of the MS symptoms. “It’s probably 100 percent better.”
“I think we’ve seen a steady improvement,” Jeff Cope added. “… I think we’ve been pretty well blessed with the results so far.”
Fatigue continues to overtake her, especially if she does too much.
“(Imagine) the tiredest you’ve ever been, then take it times 100,” she said, describing the exhaustion that hits her far too often. “There’s lots of times I go home at 5 o’clock and go to bed.”
It’s that aspect of MS that seems to frustrate and sadden her more than coping with the health problems it has caused. MS has taken away her independence — in varying degrees, depending upon how she feels — but more than that, it has taken away the satisfaction and pleasure she got from doing for her family and her friends. Now, still early in her walk with MS, she is trying to adjust to having family and friends helping her.
It was difficult, too, to admit that she sometimes needed a handicap sticker. She overcame that obstacle around Christmas, after walking from the end of the Walmart parking lot back to the toy department. As she stood there, she wondered how she ever would be able to walk back to the car.
The right to park in a handicap parking place is not one she uses frequently, and when she does, the youthful-looking 43-year-old sometimes draws snide comments from other customers.
Jeff Cope paraphrased the remarks, often about why a couple in their 40s can hop out of a vehicle with a handicap sticker and walk into a store.
“Hey, you can have my sticker, but you can take the MS with it,” he feels tempted to retort.
“I’m pretty independent,” she said, contrasting her personality with the reality of needing help sometimes now. “That’s probably the biggest God blessing I’ve had to learn.”
“Freezer friends” and family brought in frozen homemade meals that could be re-heated to feed the family of five during the early days, while she was being diagnosed and beginning treatment.
Jeff often washes dishes, vacuums, does the laundry and cooks, and their children help.
“It kinda makes me feel sad as a mom,” she said. “You’re sad your kids have to pick up the load, too.
“I can’t even imagine what it would be like if I didn’t have Jeff. He’s always saying, ‘It’ll be all right.’ ... Where would I be if I didn’t have that?”
Chloe’s teacher, Connie Neises, has been a tremendous help for the 9-year-old, the couple said. Neises got materials about multiple sclerosis and brought them to school to talk with Chloe and her classmates about MS.
“It made Chloe feel better about it,” Karen Cope said. “She’s mothered her.”
Karen, one of seven children, has gotten strong support from her family, even though they live out of town. Regular e-mails and phone calls and visits reinforce the positive attitude the Copes have adopted.
“Through it all, yeah, it’s a bad deal, but there have been a lot of blessings that came out of it,” she said. “... Probably the biggest thing I’ve learned out of this is count your blessings.”
Marriage, family ties, faith all are stronger because of what they are facing together, she said. They don’t make elaborate plans because there is no way to predict how Karen will feel from day to day. Jeff is convincing her to bring a little balance between her activities and her rest, instead of always trying to do more.
Karen joked that Jeff always had told her to slow down, and stop to smell the roses.
“The little things in life are better,” she said. “It’s not the big things. There’s things you realize, it doesn’t matter if your house is perfectly clean. It doesn’t matter if the dishes are done.”
“We had to readjust our priorities,” Jeff Cope added.
“You have to focus on the positives of your life. I think God has blessed us over and over and over, and it’s been little things you didn’t think about until you’re in this situation,” Karen explained. “I don’t know where we’d be if we didn’t have the faith in God.”
Her situation has reminded her, too, of something she learned from an Emporia State University professor, Ron Karst.
“Be kind. Be kind,” she quoted him as saying. “Everyone’s fighting their own battle. Even if you don’t see it on the outside.”
Angela Hadden
The diagnosis for Hadden, who lived in southeast Kansas at the time, came after more than six months of sporadic symptoms.
“I woke up March 10 of 2006 and my left hand, my fingers, were kind of tingling and just felt like they were asleep,” she said. “I figured, well, it’ll go away. I went and had my nails done.”
The tingling worsened that evening and she removed the acrylic nails, thinking perhaps they were aggravating the symptom.
“It got to where my whole left arm got number. I couldn’t feel nothing,” Hadden said.
She had gone to a chiropractor for treatment and later to a doctor in Independence.
A magnetic resonance imaging test revealed a lesion between the C5 and C6 vertebrae.
“That was what was aggravating my left arm,” she said.
The doctor checked her eyes and found the beginning of optic neuritis, an inflammation that now affects both of her eyes.
In a telephone call on Oct. 30, 2006, she got the same diagnosis that her mother had received about five years before: multiple sclerosis.
By then, Hadden’s disease was showing other symptoms.
“I could hardly swallow my coffee. I couldn’t talk right,” she said. “My right eye was hurting; my left eye was going nuts, tingling, burning. They put me on IV steroids right away.”
Hadden, at 35, soon became unable to work.
“I lost my job down there,” she said. “Then our house got foreclosed on down there. Then the trailer house we put our money in got hit by the flood.”
She and her husband and children, ages 10 and 14, moved to Emporia, where she had grown up, and by July of 2007, life seemed to be returning to normal. The IV treatments and Copaxone were bringing the MS under control, and she had gotten a job here.
“I started doing really good after we moved up to Emporia,” she said. “It was like I didn’t have MS any more. I was able to do anything and everything. …
“I had 14 months of remission, and then it sucker-punched me in September of 2008.”
The eye problems returned, bringing pain along with the double vision and problems with eye control.
She had an IV treatment of the steroids that in the past had brought improvement quickly.
“Normally I bounce right back and this time I didn’t,” she said.
Her doctors have switched her to another drug, Rebif, that suppresses the immune system. Hadden said the Rebif often takes up to eight months to show significant improvement.
“The fatigue is a real battle,” Hadden added. “You’re just so tired all the time. Comprehension’s off. Every now and then, things just don’t make sense. … Just every-day life is more of a challenge. There’s been a few times that I had to stay in bed all day. …
“My husband has helped out so much. He works his butt off and helps around the house, cooks dinner. He’s taken on a lot of duties that I used to do,” she said.
After the MS intensified again, Hadden had to resign from her job as a driver, for others’ safety and for her own, and now is trying to find insurance that will allow her to try a new drug and a plasma treatment that has been successful for some.
“They’re talking about as soon as I can afford it,” she said. “I can’t afford the insurance on me. It’s like more than my husband makes a month.”
Hadden has not yet been granted disability status, though her application is in the process now.
The unpredictability of MS brings good days and bad.
Hadden compared the disease’s attack on the nervous system’s myelin shields to a heavy-duty extension cord.
“Figure your nerves are like an extension cord. Your body actually eats the orange covering and the insulation and chews down to the bare wires,” she said. “Your body eats up the myelin sheath on your nerves. It eats that up and exposes your nerves.”
Some days the eye pain and fatigue are almost unbearable; some days she gets relief.
“If I’m having a good day, I take advantage of it, then I pay for it for three days,” she said. “The funny thing is, back in January, I had a Friday I was on top of the world. … I felt like a million bucks.”
She went to the doctor the following Tuesday and found that she had pneumonia.
“The reason I had such a good day on Friday was that my body had something else to attack,” Hadden said. “I felt like a million bucks, then got slapped with pneumonia.
“MS is a different disease. It’s one that’s hard to grasp.”
And, she said, her neurologist soon will check to see if Hadden as Devic’s disease.
“It mimics MS, only it’s 100 times worse,” she said. “I’m going to be having a spinal tap done and some blood work done next week to see if that’s it.”
copyeditor28 (anonymous) says...
This is a well-written article, expressing the physical, emotional and daily-life struggles these women (and others with MS) have. I applaud these women for sharing their stories. Karen and Angela -- you will be in my prayers.
April 17, 2009 at 5:13 p.m. ( permalink | suggest removal )