MEET JEFFERY, EMILY, CHARLES AND LISA
Five years ago, the Multiple Sclerosis Foundation (MSF) designated March as National MS Education & Awareness Month. The primary goal was to raise consciousness among the public about this often-misunderstood disease, as well as to help those who have it become further educated and empowered.
MS is a complicated chronic, neurological disease that affects the brain and spinal cord. About 65 percent of those newly diagnosed are between the ages of 20 and 40, but MS can appear in early childhood or after age 60. The most common symptoms associated with MS include fatigue, weakness, numbness, spasticity, tremor, difficulties with balance and walking, bladder and bowel problems, and visual disturbances. But not all symptoms affect everyone and no two people will have the same manifestations of the disease.
To illustrate the many faces of MS, meet Jeffrey and Emily, Charles and Lisa. They’re quite different from one another, but they all share a similar experience.
Eleven years ago, Jeffrey Gingold was a successful litigation attorney with three university degrees. He spent long hours in the courtroom resolving complex legal disputes. In his free time, he enjoyed ice speed skating, and volunteer work with the state bar and local art groups. He and his wife, Terri, a kindergarten teacher, had two daughters, Lauren and Meredith.
Owing to cognitive issues associated with MS, Jeffrey began to have trouble thinking, focusing, and making sense of his own handwriting. After a courtroom episode when his mind went blank in the middle of a hearing, his law career came to a grinding halt. Today, at 47 years old, he is retired.
Jeffrey’s primary symptoms are invisible. Paradoxically, he continues to speed skate, although a bit slower, his balance strained from time to time. Many people with MS experience a temporary worsening of symptoms when they become overheated. Speed skating allows Jeffrey to maintain strength and endurance, without having to worry about heat sensitivity.
The latest neuropsychological research shows that MS causes some deterioration in cognitive function in 30 to 70 percent of those who have it. While the severity of dysfunction varies, the primary deficits involve attention, concentration, and information-processing speed. Until recently, cognitive function in MS received little attention. In fact, some physicians are still in the dark about it.
In March of last year, Jeffrey published Facing the Cognitive Challenges of Multiple Sclerosis through Demos Medical Publishing. It’s one of the first books about MS cognitive dysfunction written by a patient. In it, he brings readers inside the mental twister of the disease- –such as delayed recall, difficulty accessing one’s words and recognition lapses. Last summer, Jeffrey was invited to appear on television’s “The Montel Williams Show” to let others know about this invisible symptom of MS. Williams also has the disease.
Since his retirement, Jeffrey has helped to secure funding for an MS early diagnosis program for indigent women in Wisconsin, and to establish an income tax check-off for voluntary giving to fund MS programs and services. He received the 2003 Volunteer of the Year Award and the 2006 Outstanding Innovative Volunteer Award from the Wisconsin chapter of the National MS Society. He is also a contributing writer to MSFocus, the quarterly publication of the MSF.
Emily Kiraly, a sweet 16-year-old with an endearing Southern accent, was diagnosed with MS about a year ago. Like most teenagers, she can often be found in front of her computer, instant messaging friends. She plays electric and acoustic guitar and is a member of her church youth group. She also teaches Sunday school.
Emily remembers her first symptoms: “I was playing my guitar and my fingers went all numb and tingly,” she says. “Then I tripped over the curb. I’m kind of clumsy, so I didn’t think too much about it. But later, I fell again. At home, when I was typing, I kept repeating letters and hitting the wrong keys. I’d been sick a lot that year, but this one night was just really weird.”
Emily was hospitalized for a week and treated with intravenous steroids. As the days passed, she lost more feeling and mobility, and needed a wheelchair to get around. She knew little about MS, and her fears were based on its most severe cases. She had been diagnosed with relapsing-remitting MS, the most common form of the disease.
What Emily experienced was a clearly defined acute attack (also called exacerbations), which generally lasts from days to weeks, with full recovery, or with some residual deficit upon recovery. Upon release from the hospital, she attended physical and occupational therapy on an outpatient basis, three times a week for three months. As is often the case with MS, therapy helped tremendously.
As Emily recovered from her attack, she came to realize just how many people truly cared about her. Those close to her began to understand that just because she’s in bed one day, doesn’t mean she’s going to be in bed the next day. That’s the nature of the disease. Today, Emily experiences extreme fatigue and some tremor. While it’s not debilitating, she does drop things a lot. She’s also noticed slight cognitive changes.
Emily has been self-injecting with Betaseron (Berlex) since March of last year. The disease-modifying medications have not yet been extensively studied in children, but many kids who are diagnosed with MS are still taking them, generally started at a lower dose, according to their size and tolerance level. Side effects and benefits are similar to those seen in the adult population.
“Being diagnosed with MS as a teenager is not the end of the world,” Emily says. “Yeah, sometimes it’s really tough. But a whole lot of good can come out of it, too. MS is something you have no control over. But you make the choice of whether or not you want to turn it into something good or bad.”
A tight Achilles tendon first brought young Charles Crawford to the ice rink. Because the toddler walked on his toes, his doctor recommended ice skating as therapy. By the age of three, Charles was gliding gracefully across the ice, performing front and back crossovers with ease. His ability to walk like other little boys, however, didn’t come until two years later. As he got older, Charles would long for a break from the rink. But after a month away from skating, he’d start walking on his toes again. So, he stuck with skating, began competing in the sport at the age of five, and pursued it as a career after graduating high school.
At the age of 20, Charles began having bouts of dizziness and fatigue. Off the ice, he was plagued by balance and hearing difficulties, and a strange facial numbness. Several doctors suspected a severe inner-ear infection, but Charles wrote the symptoms off as stress. A few years later, he began coaching young skaters, and traveling to Sweden to train both singles and pairs.
In 2003, he was diagnosed with MS and the disease hit full force. He struggled through months of physical therapy in an attempt to walk normally and regain his balance. Soon it became clear that MS was not only going to end his skating career—it was going to put an end to his coaching, too.
“Until that point, my life revolved around skating,” Charles says. “I’d been skating since I was three and then—poof—it was gone! Despite three lesions on my MRI, and positive results on my evoked potential and lumbar puncture (three major diagnostic tools used to confirm MS), all I wanted was a second opinion. All I cared about was when I could get back on the ice.”
Despite the shocking turn his life had taken, Charles skipped the typical period of anger and depression and went straight to acceptance. He began channeling everything he had into his hobby—travel and fine art photography-–and never looked back. In 2004, he opened his own business, Crawford Imaging, in West Virginia.
Today, Charles faces the same challenges as other photographers and business owners—plus MS. At one point, he lost 60% of the vision in his left eye from optic neuritis (inflammation of the optic nerve). As a photographer, this was especially scary. But Charles has learned to take what MS throws at him one day at a time, and to do as much as he can.
Feeling isolated and alone, he realized he didn’t know anyone else with MS. Not one to sit around and dwell on his problems, with the support of his physical therapist, he decided to start an MS support group. He also became a patient advocate, answering questions and providing encouragement to the newly diagnosed.
“Some days, I miss being on the ice. Looking back, it’s almost like that was someone else’s life,” he says. “My life is different now. Each morning, I get up and try to deal with my new life and the new me as best I can.”
Lisa Wartchow was diagnosed with primary-progressive MS 11 years ago, at the age of 25. Throughout her childhood, she’d been in and out of the hospital with health problems. When she was finally diagnosed with MS, she was scared, angry and depressed. But she was also relieved to finally have a name for what was wrong with her. Primary-progressive MS, less common than the relapsing-remitting form of the disease, is characterized by the progression of disability, without any obvious improvements.
Shortly after marrying her high-school sweetheart, Lisa was delighted to learn that she was pregnant. Contrary to doctor’s predictions that she would never bear children, she had Megan, and two years later, gave birth to her second daughter, Emily.
Like so many women with MS, Lisa felt great during her pregnancy. But after the birth of her second child, she lost bowel and bladder control and required catheterization. Driving and working were no longer possible, and Lisa could only walk very short distances. In constant pain and struggling with major depression, her weight dipped to 92 pounds. Lying in bed one day, she knew she had a choice to make. With the love and support of her family, friends, and church, Lisa decided to fight. As anyone could understand, she desperately wanted to be there for her children.
In an effort to ease Lisa’s severe pain and spasticity, her doctor implanted a baclofen/morphine pump. Lisa also sought medical treatment for her depression.
“When I finally contacted the local independent living center and took advantage of the resources available to me, things began to improve,” Lisa says. “I was able to get help with cleaning and cooking, and regular visits from an occupational therapist. The Vocational Rehabilitation Center enabled me to go to school and develop a business plan so that I could turn my hobby into a home-based business.”
A gifted artist, Lisa launched Heavenly Hobbies, a delightful shop laden with rustic floral arrangements, hand-painted baskets, elaborately painted birdhouses, lighthouses, and other creative treasures.
In 2003, Lisa was crowned Ms. Wheelchair Wisconsin, a title she sought in order to be a voice for others with chronic illness and disabilities. She spoke on the importance of maintaining independence and advocated for improvements in the community-service system for those with disabilities.
In order to take her girls to school, Lisa learned to drive in a specially equipped conversion van with hand controls and a lift. She tried for years to get a service dog, but kept running into obstacles. Instead of giving up, she read a few books and trained Max herself. This loyal four-legged friend can untie Lisa’s shoes and take them off, close cupboards, zip and unzip zippers and pull ceiling fan chains. He’s also trained to get clothes from her closet.
“I just shine the [laser] light on what I want to wear and he brings it to me,” she says. “Max has really helped me maintain my independence.”
Today, Lisa can no longer paint due to limited dexterity and numbness in her hands. So, she’s taken up photography and the intricate planning and design of her own backyard flower garden. Her dad, her kids, and their friends help with the actual planting, and the beauty that springs forth from the earth a few months later provides plenty of pleasure. Lisa has a way of seeing the silver lining behind the many clouds that try to shadow her world, a trait that she has passed on to both of her daughters.
Because MS has many faces, National MS Education & Awareness Month is a vitally important effort. So, this March help us put MS in the spotlight. Do it for Jeffrey and Emily, for Charles and Lisa. Awareness leads to understanding. With understanding, fear and discrimination recede as naturally as day follows night. Imagine a world with more love and compassion, less pain and fewer barriers. Imagine …
by Christine Ratliff
Christine Ratliff is the editor of MSFocus, the national magazine of the MSF (www.msfocus.org). She has written several awardwinning articles for South Florida Parenting magazine, and she reviews books and restaurants for local publications. She can be reached at ch***@ms*****.org.
To learn more about MS or to participate in National MS Education & Awareness Month, contact:
The Multiple Sclerosis Foundation
6350 N. Andrews Avenue Fort Lauderdale, FL 33309
There are currently six disease-modifying drugs approved for the treatment of MS (Avonex, Betaseron, Copaxone, Rebif, Tysabri, and Novantrone). While these medications have been effective in addressing the physical aspects of MS, they have been less effective in addressing the cognitive aspects. Research into the effects of these drugs on cognitive dysfunction has shown limited benefit. Avonex appears to have some impact on slowing the rate of decline in processing speed, memory, executive functioning and visual-spatial ability. Betaseron has shown some effect in improving memory. But overall, the results are inconclusive.