April 15, 2004
Stephanie Skarohlid of Princeton says there are times when people don’t understand why she doesn’t have the energy to do something and she’d like to yell out something to the effect, “I just don’t feel good.”
Kelley Johnson of Princeton, a friend of Skarohlid’s, can understand the feeling, saying she frequently feels fatigue, especially at her job in the afternoon, but yet many don’t know why.
Both have something in common – they have MS, or multiple sclerosis.
MS is a chronic disease of the central nervous system affecting the brain and spinal cord. More than 400,000 people nationwide live with what the National Multiple Sclerosis Society describes as the “devastating effects” of the disease. As the organization attests to the comments of Skarohlid and Johnson during a Union-Eagle visit with them last week, “someone you love may have MS and not know it.”
There are many promising treatments for the disease but no cure. The national MS organization encourages everyone, especially those with MS, to get preventative health screenings and talk to a doctor about how to prevent health problems. These include high blood pressure, depression and heart disease.
Johnson and Skarohlid say there are many people in the Princeton area with MS. Skarohlid, 55, who was diagnosed with MS only four summers ago, but now realizes she probably had the first symptoms of it when she was 28, knows of a dozen or more in Princeton who have MS.
Johnson, 40, who was diagnosed in March 2002 but realizes now her symptoms began in December 2000, knows about 10 people in Princeton with MS.
Some of those people are likely to participate with Skarohlid and Johnson when they are in separate MS walkathons on May 2.
MS walkathons are planned at locations across the state that day. Walkers are usually part of teams and each participant takes donation pledges and walks one of the routes of varied lengths.
Johnson will be in the MS walkathon in St. Cloud, which begins and ends at St. Cloud’s Riverside Park and has registration from 9 a.m. to 10 a.m.
Skarohlid, who heads a team called Steph’s Steppers, will be in the Twin Cities MS walkathon which begins at 8 a.m.
Skarohlid has had MS symptoms for much longer than Johnson. Skarohlid, who worked for many years as a registered nurse, finally gave up her job as she found it increasingly difficult because of fatigue.
Johnson has managed to keep her job in the human resources department at Crystal Cabinet Works in Princeton. But she now has a list of things she used to do, such as playing basketball a lot with daughter Allie, 14, and playing catch with son Eric, 10.
All that is very limited now, said Johnson, commenting that she didn’t notice how she gradually cut back.
“You get home and you’re tired,” Johnson said. “You don’t have as much energy as you used to.”
Skarohlid now realizes that it was MS that caused her to suddenly lose the use of some of her left side when she was about 28. She felt it in her face, her speech, eyesight and left arm.
Skarohlid consulted with a neurologist who had a CT scan done of Skarohlid’s head but nothing was detected. That was before the MRI scan which can detect much more, and is the main test used to diagnose MS, she explained.
“It was very scary and equally as frightening was that they couldn’t find anything wrong,” she remembers.
An MRI scan can pick up little white elyptical-shaped spots called lesions that are scattered about the brain and central nervous system, she said.
Skarohlid’s symptoms include muscle spasms and also pain in her hands and feet, plus fatigue and memory and thinking problems. She has found drugs for everything but the cognitive part, she said, explaining that there are no drugs for that.
Johnson’s first MS symptoms began in December 2000 and lasted for more than a year – a numbness on the right side of her face, hand, arm and leg and then it went into her right foot.
Johnson said she thought she had carpal tunnel and went to a chiropractor for a week or two. That didn’t help so, taking the advice of the chiropractor, she went to a neurologist.
“I was pretty scared because I did not know what it was going to bring,” she said about getting the diagnosis for MS in March 2002.
Johnson was on vacation in Florida with her husband and children in November 2003 when she had more problems. They were in a motor home heading home when she found part of the vision in her right eye was gone and a big black spot was in the lower part of her vision. The eye also hurt when she moved it and she lost her balance a lot.
When she got home she called a neurologist who prescribed a steroid that helped.
Johnson’s MS symptoms come and go a couple of times per week, which consist mostly of a burning sensation moving around in her legs, and some numbness, mostly in her right hand.
Johnson still golfs but, like Skarohlid, suffers when temperatures are high, Skarohlid explaining that is common for many with MS.
As Skarohlid talked about her condition, a delivery truck pulled into her yard and she went to the door to pick up a package that contained drugs for treating some of her MS symptoms.
She explained that four major injected-type drugs are used for MS to prevent future disabilities and treat the symptoms. Skarohlid, for example, injects herself once a day with a drug called Lopaxone.
The treatment approach is “system management,” she added. For example, to deal with her muscle spasms, she takes a muscle relaxer, and another drug for her pain and one for the fatigue.
There is no drug to help with cognitive problems, however, she said. For that, “you just learn how to live with that,” she added. “I can’t remember my appointments and where I am going to be tomorrow. I use a Palm Pilot [electronic handheld device that stores information]. I absolutely depend on it.”
Skarohlid keeps addresses, directions, schedules and more on the device. Because MS has made it difficult for her to do multiple things at once, she just limits activities to one at a time.
Skarohlid noted that one of the aspects of MS is that it is not unusual to get a relapse instantly, or to go without another MS attack for many years. An attack is an exacerbation of symptoms.
Skarohlid and Johnson have been reading as much as they can about the subject and believe in the walkathons because of the need for money for research and other MS-related work.
Johnson’s insurance provider has a program that she likes in which a nurse calls customers who have chronic illnesses or diseases to remind them monthly to give suggestions and ideas to help.
Skarohlid mentioned that Princeton has an MS support group that meets monthly at the Fairview hospital in Princeton.
Both have developed philosophies about their disease. Johnson mentioned that people with MS actively work to maintain their health the best they can. “When they come up with a cure we want to be as well as we can be,” she explained.
Skarohlid said that a person’s way of dealing with an illness has a lot to do with how they look at it.
“If you want to be in a sick role, people will treat you that way,” she said. “But if you live with it, it’s a part of your life.”
Skarohlid called her MS a gift because through leaving her job, she has been able to spend much more time with her “grandbabies,” the grandchildren she takes care of regularly.
Noting that she is part of a five-generation family which includes her 98-year-old grandmother, Esther Bergeron, she said she receives support from her family. “My family, especially my daughters and my husband, are the reason I am doing so well,” said Skarohlid. “They are so encouraging, so supportive. They keep me on my toes.”
Johnson describes herself more in the early stages of dealing with MS, that of dealing with accepting her diagnosis. “I still try to think I don’t have it, but it lets you know,” she said.
Johnson did say she is “taking it in stride” because she realizes that the disease doesn’t lower her life expectancy like some diseases do. The quality of life is not like when she didn’t have MS but the worst part is not knowing what MS is going to do in the future, she said.
Johnson pointed out that her family has gotten accustomed to her doing less because she doesn’t have as much energy.
One added benefit is what her daughter has learned. While most kids
don’t understand how someone who has MS might have problems because they
don’t necessarily show it on the outside, her daughter now knows how to
relate to people who have MS, she said.
Copyright © 2004, Princeton Union-Eagle