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Rhodebeck: Walk MS and the quest for a cure

ST. CHARLES – Growing up, I didn’t know something was wrong with my mom. She did what good moms do: Volunteered at my school, led Girl Scout troops and, among many other things, made sure our family had good meals to eat.

Late into my senior year of high school, I learned she had been coping with multiple sclerosis for years.

MS is a chronic disease that attacks the central nervous system. According to the National Multiple Sclerosis Society, symptoms can be mild – such as numbness in limbs – or severe – such as paralysis or loss of vision.

Or, as my mom, Anita Rhodebeck, summed it up, “MS affects the nervous system, which means any bodily function you have today may be gone tomorrow. Think about it. And there is no cure yet.”

Sunday, I will be among those throughout Illinois who will participate in Walk MS, a fundraiser that speeds new treatments for people with MS, ensures financial support for people dealing with the disease and supports local programs.

The St. Charles walk is set for 9 a.m. at Pottawatomie Park. Registration opens at 7:30 a.m.

My mom said she’s grateful that other relatives and I have volunteered and supported the National Multiple Sclerosis Society in its annual walks in her name.

She said when she was first diagnosed with MS, someone told her she was lucky it was just MS and not cancer – that she wasn’t going to die from it. She said her friend was wrong.

“You do die from MS,” my mom said. “Maybe not totally, but bit by bit as the MS progresses and takes away your ability to live life the way that you used to, the way you want to live. Each time MS impairs or permanently takes away a bodily function, you grieve; a part of yourself has died. You go through the five steps of mourning, every time.

“To do anything physical is a process – from getting dressed and taking a shower to cooking a meal and doing simple household chores. MS is very frustrating when I want to do things that I am no longer able to do. How can this not affect your family?”

She said the general public has a hard time understanding the disease because it affects people differently.

Of the forms of MS, she said, the type the public associates with is relapsing-remitting MS, which includes periods of remission and flare-ups, or exacerbations. Even during times of remission, she said, the next relapse is always in the back of your mind.

“I do have hope that one day there will be a cure,” my mom said. “You have to have faith in God, hope in the future and never, ever give up on yourself.”

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