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Accepting the MS Challenge...

A Family Approach
  
by Christine
(daughter of MSWorld "family" member
Gloria aka Glo)

“You have multiple sclerosis,” were the words uttered candidly by the doctor standing next to my mother's hospital bed. Oddly enough, a strange look of relief seemed to spread across Mom's face. Relief that she wasn't imagining the strange symptoms she had been experiencing. Symptoms such as double vision, fatigue, numbness, tingling and weakness. While Mom seemed somewhat relieved, the rest of us were emotionally charged and very afraid. We had heard of MS and the picture that came to our minds was not pretty.

The doctor, a leading expert on MS, sensed our apparent distress and immediately began to explain what MS was. By using an analogical approach, he was able to tell us in a way that even I, a young teenager at the time, could comprehend. He told us that the brain works like a big computer. It is an electrical system. It sends messages down wires. They are not called wires in the nervous system. They are called nerves, but they function as wires, electrically. It is a good, efficient and effective system. The reason it is so effective is that it is highly insulated. Similar to rubber insulating a wire, a fatty substance, myelin, insulates the nerves. The myelin allows rapid, efficient electrical conduction. For some reason, in some people, this myelin degenerates. When it degenerates, it leaves a hardened area. If one could take out the nervous system and look at it, the demyelinated areas would look scarred, or sclerotic. Thus, the process has been named sclerosis. Because it occurs in spotty areas, it is dubbed multiple sclerosis. The doctor then showed us the white “spots” on Mom's MRI scan and continued to tell us that people have more myelin than is necessary.

In much the same manner that one can lose a kidney and get along, some myelin can be lost without creating a problem. Depending on how much myelin is lost in the brain or connections carrying coordination, clumsiness results. If the myelin is lost in the connections of strength, weakness results. That is why no two people with MS are ever exactly alike. This simple analogy left an indelible mark on my mind and, to this day, I refer to it whenever someone asks me what MS is.

As the doctor left us that day, we had no idea what impact MS would have on our family of four. From this moment on, the words, “You have multiple sclerosis” would affect each one of us on a daily, ongoing basis.

My mother's ability to do the things she wished to do daily slowly began changing. It was often difficult to understand what she described as “overwhelming fatigue.” Although this was not a visible symptom, like many of her others, it became severe enough to force her to leave a job she dearly loved. This fatigue could halt her activity at any time and at any place. This insidious symptom made it extremely difficult to plan family activities. Limited strength affected my mom's ability to perform simple tasks, such as lifting things from the stove or cupboard. I could see the look of frustration on my mother's face each time she had to ask for assistance.

Soon after my mom's diagnosis, my older brother developed numbness and tingling in his own extremities. The doctor informed him that he was experiencing pseudo-symptoms, a condition that often happens when someone you love is suffering. His symptoms subsided several weeks later. We learned from this experience that our minds are capable of doing powerful things when we are under a great deal of stress.

My dad tried to remain strong for the rest of us, but his uncertainty of what the future might bring was easy to detect by the deep worry-lines on his forehead. He seemed to keep constant vigilance over Mom's activities.

Denial became my best defense against the “challenger.”  I simply acted as if nothing had changed and tried not to notice my mom's worsening condition.  Fortunately, after six years, we have all learned to deal with Mother's MS in a much more accepting way.

Uncertainty of what the future holds has a constant impact on every family who deals with chronic illness.  My mom, in an effort to remain positive, reminds us often that every person actually lives with uncertainty in their lives. Not one of us knows what tomorrow might bring. We must be the best we can be right now and live in the present moment. This positive perspective has helped my mother maintain a hopeful attitude about her future with MS.  She has faith that a cure is just on the horizon and that happiness is a state of mind and not a state of health. I admire and respect her constant determination and know that, in many ways, MS has strengthened not only our family, but all who know her.

I often wonder what I, and our society as a whole, can do to improve the quality of life for my mom and the many others like her. As young people, we CAN display initiative and take action to speed the slow process of implementing and enforcing laws which protect and provide for the millions of physically challenged in this country. Our generation CAN right some of the mistakes our society has made in the past. We CAN speak to and teach others about chronic illness and disability. By educating, legislating and funding, we CAN make an enormous difference to the next family who hears the words “You have multiple sclerosis.” 

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