Health

MS strikes nearly three times more women than men.

Five women ranging in age from 32 to 64, share how being diagnosed with Multiple Sclerosis (MS) has affected their lives. MS is a chronic and often disabling disease that attacks the central nervous system. Symptoms can be mild, such as numbness in the limbs, or severe, with paralysis or loss of vision. Everything related to MS, from its progress, severity and specific symptoms, is unpredictable and may be different for each individual.

Tracy Bohm of Wells, Minnesota, who is now 32 years old, was diagnosed at age 28. “I figured it out before the doctor even told me, but I wasn’t prepared for the words – ‘you have MS.’”

Angela Hyde of Lennox, South Dakota is 39. About one year ago, doctors identified her health problems as MS. “I was told I probably had it for at least five years,” she says. “I also have migraines, so they masked some of the MS symptoms early on.”

Kate Fuller of Trimont, Minnesota says the hardest part of having MS was, “Losing my career as an RN. My symptoms are a lot of fatigue, slow thinking process and electric or buzzy feelings all of the time. I am unsteady for walking, too.”

Shelley Stackhouse of Swisher, Iowa, now 58, has been dealing with MS since she was 30 years old. She says, “My children were in kindergarten and second grade when I first got MS. They were disappointed that I was too ill to go on class trips or help with strenuous school activities, but whatever pleasures MS took from us over the years, my children gained some awesome benefits. They are kind, patient, compassionate, caring and loving adults.”

Kathy Kahnke of Redwood Falls, Minnesota, age 64, has lived with MS for over 33 years. She explained her initial reaction to the diagnosis. “I was scared, having lived with the symptoms for almost ten years. I became paralyzed on my right side, but over time have regained the use of it.”

Most people are diagnosed with MS between the ages of 20 and 50; however it has been known to appear in young children, teens and much older adults. In addition to pursuing a cure for MS, scientists also seek to solve the mystery of why MS occurs at least two to three times more often in women than men. This gender difference has stimulated important research initiatives looking at the role of hormones in MS, but as yet without significant answers.

What causes MS? While not contagious, nor directly inherited, those who have studied MS are convinced that heredity plays a major role. The average person in the U.S. has about a one in 750 chance of developing MS, but relatives of people with it have much higher likelihood. But, even though identical twins share the same genetic makeup, the risk for an identical twin is only one in four, meaning other factors besides genes are involved.

Kate has a sister who was diagnosed with MS five years after her. She says, “Her MS is different from mine. She is able to keep working, but lives with the ‘not knowing’ about her health and medication that is not covered by her insurance.”

Angela had a great aunt with MS. She says, “My diagnosis made it difficult for my mother. Her only experience with MS was with my aunt many years ago and it was hard for her to see past my aunt’s disability and realize MS affects everyone differently.”

No one in Shelley, Kathy or Tracy’s families have had MS. Tracy states, “It just goes to show that anyone can get MS.”

Emotional support is an important need for anyone enduring this unpredictable, chronic disease. While some families are quite supportive, others are not.

Angela explains her situation. “I was engaged at the time and my fiancé was also my business partner. I had invested money in a restaurant with another person and my fiancé was supposed to be managing the place. We had just started this new business arrangement in March; I had a bad flare up in April, woke up and couldn’t feel my left leg. That sent me back to the doctor for more tests. The doctor called me while I was driving down a busy street and said, ‘It looks like it is MS. You can look on the Internet for more information.’ After pulling over into a Hy-Vee parking lot and sitting there for a minute, I called my fiancé whose response was, ‘Well, that’s great timing.’ Needless to say, that was what Oprah would call an ‘aha’ moment. I realized I needed to make some major changes in my life. At the same time, I was trying to deal with being diagnosed with MS. It was a bad summer, but I learned many amazing lessons from it all and continue to learn. As things are finally starting to settle down, I can see the diagnosis as a blessing.”

Kate says, “My husband is supportive, but he feels the loss, too. Like we enjoyed chopping wood for the wood stove together and now I can’t help because I might fall down and get hurt.”

Shelley remarried in June 2008 and says, “Tom is an important in my life. He is a supporter of me and is a compassionate, loving partner.”

Kathy explains, “My mother, who is an RN, started to take care of me totally. She wanted me to rest all the time. I finally realized that I had to do things for myself and my son. My husband was in denial at first; he didn’t want me to have MS, but since then has been supportive.”

Tracy says, “My mom’s reaction is what I remember most. When I was 24, I had bad headaches; nothing the doctors gave me helped. I’d complain to her about it and she’d tell me to take Tylenol. She thought I was being a hypochondriac, like she’d suspected I was while I was growing up. I was a bit of a drama queen, I guess. When I had an MRI done, it showed lesions, but because I didn’t have MS symptoms, they wouldn’t diagnose me. Mom felt awful that she hadn’t believed me when the MRI came back abnormal. During all the tests, she stayed by my side. When they wouldn’t diagnose me with anything, we didn’t know what to think, and I went back to wondering if my mom was right to suspect me of being a hypochondriac. Later, when they confirmed I had MS, I just cried. The only interaction I’d had with MS was when I was a home health care nursing assistant taking care of a woman who had a severe case and wasn’t able to do most daily activities. I figured my future was one of no walking, home health aides and misery. I was so scared!”

But Tracy’s mom convinced her to have a positive attitude, do what the doctors says, and just keep living like always. At the time her children were too young to understand what was happening.

“When I was diagnosed, Jamie [my husband] wasn’t in the picture,” Tracy explains. “When we started dating he said he wouldn’t have known that I have MS. We got married in 2007 and he has been supportive. If I am not feeling up to par, he will cook, clean, do laundry, cart the kids around and do whatever is needed.”

Treatments that have worked for these women range from Yoga, acupuncture, cortisone and a combination cocktail of symptom relief medications to having a close relationship with God.

Shelley says, “MS has had a profound effect on my life. I have wondered if MS were not part of my life, would I be who I am now? My life is faith driven, in the Lord and in myself and my ability to find positives in any situation. I will not allow MS to make me less of a person than I am or make things I want to accomplish impossible.”

Some important things to remember are, according to Tracy, “Keeping a positive attitude is so important. This disease seems to thrive on stress, depression and illness. I have learned that I am a strong woman, a fighter. I will reach out to as many people as I can who are affected by this disease because I don’t want one person to ever feel alone or to lose hope.”