Dec 1, 2002
Marcia T Tofteland
Real Living with Multiple Sclerosis
HOW MANY TIMES have you heard the questioning plea in the headline from your child? You've heard it too often if your experience has been anything like mine. How can this be resolved? Can it be resolved? The answer might be "no"-at least not in the way your child might desire.
Fatigue is a major problem for many people with MS. For me, fatigue was my most debilitating MS symptom. What do we do when our children want to play in an outdoor park, a playground, or a swimming pool on a hot summer day, bake cookies from scratch, or engage in any of the dozens of other activities that seem so simple to do for anyone without MS fatigue?
In my first "Paths of Parenthood" article (June 2001), I quoted the following words of Parker J. Palmer (author of The Courage to Teach) from his book Let Your Life Speak: "The story of my journey is no more or less important than anyone else's. It is simply the best source of data I have on a subject where generalizations often fail but truth may be found in the details."
These words are relevant to the writing efforts of all of my articles. I'll share with you the specific ways I coped through the years with this issue of fatigue with our son, Joshua. I hope my experiences resonate for some of you.
When Joshua was a toddler, and as he grew older, one of the games I played with him was a popular, simple one called Candy Land. Joshua enjoyed this game and he especially enjoyed our time spent playing the game together. My MS was very benign early in his life. By the time Joshua was 4 years old, MS fatigue had raised its ugly head with a vengeance. But, because we had established game playing as an enjoyable mother/child activity, Joshua and I continued to play.
As Josh grew older, we changed our games to match his continuing development. A game we particularly enjoyed and played for years was a simple game won by chance (Trouble). One contestant at a time pushed a clear plastic "dome," which gave the player a number of spaces to move a playing piece. As Josh became capable of more complicated games, we began to play Monopoly, the ever-popular purchasing and selling of real estate, "going directly to jail, not passing go, and not collecting $200" game!
As Joshua matured, we began playing Mindtrap, a challenging mind game. Each participant picked a card out of a box. On one side of the card was printed a situation, scenario, or problem solved by the use of logic, attention to detail, or mathematics. On the other side of the card, the answer to the "riddle" was printed. Incidentally, we usually skipped the problems that needed mathematical solutions. This was at least as much a result of Mom's math weakness as her son's!
Occasionally, we played our own version of a popular trivia game. Game playing gave us hours of pleasure. We had fun together, talked, and exercised our minds-a good practice for anyone at any age.
The playing of games also provided an opportunity for our son to learn about good sportsmanship, fair play, and how to lose gracefully. We recently played a few rounds of the challenging mind game I mentioned. Playing daily would be of benefit to my waning cognitive abilities. Unfortunately (for me, not for him), Josh will be leaving for his junior year of college in just a few weeks. I plan to find another partner for the game.
I find game playing doable, even considering my MS fatigue. Though the playing did occasionally tire me, I wouldn't trade a moment of it.
I do realize that my experience comes from a mother's point of view. There are many dads who could be (and I hope are) reading my columns. I have no specific experience, other than games, to share with fathers. Perhaps the fathers reading this can E-mail me about similar experiences.
Nearly anything we parents do, in the normal course of a day or a weekend,
can be done with the accompaniment of our child. Whether or not it's a
special activity or simply something ordinary is probably not that important.
Including your child whenever possible will improve communication and create
© 2002 Real Living with Multiple Sclerosis