Parenting with multiple sclerosis A mother's story

Understanding multiple sclerosis
Rising to the challenge
and beyond

Being a parent is never an easy job, but adding the challenge of a debilitating disorder such as multiple sclerosis makes the days that much harder. Hear the inspiring story of how this mom is rising to the challenge.

March is National Multiple Sclerosis (MS) Awareness month. MS is a chronic disease that affects the brain and spinal column and is twice as likely to appear in women than men. According to the Multiple Sclerosis Foundation, more than 2.5 million people around the world are living with MS. The symptoms take a toll on the body and can make keeping up with the busy lifestyle of a mom very difficult. SheKnows had a chance to talk with Tracy, the mother of a preschool girl; Tracy is living with MS. Tracy shares openly and honestly what life as a mother with MS is like.

SheKnows: When were you diagnosed with Multiple Sclerosis?

Tracy: I was officially diagnosed in August 1999.

SK: What were your first symptoms?"An MS diagnosis is not a death sentence. Does it alter your life? Yes, but there is no reason why life can't be normal and fun."

T: My first symptom was in 1997. I had a grand mal seizure for no apparent reason that wiped out my short-term memory. Unfortunately, I was in graduate school, which meant that I no longer remember the majority of what I had learned, and despite my best efforts I had to take a medical leave of absence. I then worked with a therapist to improve my memory, got a job doing data entry and later went on to work as an administrative assistant for a firm in the legal field.

After that I was told I had a seizure disorder, began medication and went on with my life. I got married and one day woke up with severe vertigo. I had no idea what was wrong and went to numerous doctors. I eventually ended up at the neurologist, who said that he had thought I had MS, but he needed more than one relapse to officially diagnose me. We did a spinal tap, an MRI and I then started on Copaxone, which is a daily medication that I inject.

SK: What is the most challenging part about having MS?

T: Learning to live with the fact that there is no way to know when a relapse will occur.

SK: How does MS interfere with your daily life as a mom?

T: My daughter is very energetic and always want to play and do things with me. Often she can run faster than me, or she doesn't understand that I need to sleep a lot more than she does. She doesn't understand that I'm not the energy machine that she is and that I need relaxation time. She also doesn't understand the shot I give myself every day and has said that when she grows up she'd like to give herself a shot like I do. I tried to explain, but I don't think a 3-year-old really understands that doing a shot isn't a good thing.

SK: Is there anything you would like people to know about MS?

T: An MS diagnosis is not a death sentence. Does it alter your life? Yes, but there is no reason why life can't be normal and fun. I'm in moms' clubs, I hike, bike ride, exercise and I worked until my daughter came along. By the way, we were unable to have biological children and we chose to adopt. My diagnosis with MS did not hold me back or stop me. I only stopped working because the thought of the long days combined with raising my daughter and running our household seemed overwhelming for not much money after day-care expenses.

Parenting with a chronic illness >>SK: What can others do to support a friend or relative with the disorder?

T: Have sympathy for their fatigue, since MS is not obvious. Unless someone's condition has gotten to the point where they are not independent, in a wheelchair, using a walker, etc., to the outsider the person looks perfectly normal and healthy. But their foot may be numb or they may have some other issue that is not obvious. Offer to run errands if they are house-bound because of a relapse. No one likes to have to beg for help, since with MS a plaque can occur anywhere and cause any number of things, ranging from vision loss and numbness to incontinence.

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