Living with multiple sclerosis: Amanda's story
Amanda Weinhardt of New Philadelphia shares her experience living with multiple sclerosis.
March is Multiple Sclerosis Awareness Month, which is designed to increase public knowledge about this still-incurable disease. Increasing awareness of MS is important to sufferers of the disease like Amanda Weinhardt of New Philadelphia.
Weinhardt began her own personal mission to help people better understand the illness when she planned a community event in 2015, something that proved too exhausting to continue in subsequent years. Since then the effects of her MS have worsened.
“It’s more difficult to walk now,” Weinhardt said. “I’m supposed to use a cane to steady myself, but I really try not to do that. I hold onto my husband’s arm anytime I need a little support.”
Daily tasks like laundry or cooking are made more difficult when she must take each step with caution.
“There’s always the strong possibility of falling,” she said.
Weinhardt uses a wheelchair when the distance or terrain are just too much to tackle on foot. Her difficulties with mobility are made greater by her multi-level home.
“I move the laundry basket very carefully, one step at a time, and now I know there are eight steps to the basement and seven to get to the garage. There are so many simple things you take for granted until you’re limited in what you can do,” she said.
She now finds it difficult to write as her right hand is always numb.
According to the National MS Society, multiple sclerosis is the result of the body’s own immune system attacking the central nervous system and causing damage, which slows or stops nerve transmission. There are four distinct types of MS, further complicating efforts to find a cure.
For Weinhardt, unsteadiness is just one of her daily challenges. “I have numbness in my limbs, tremors and restlessness in my legs constantly,” she said. “In winter when it’s cold, my legs just lock up.”
She was diagnosed in 2012 but learned at the same time she had likely been carrying the disease in her body, largely dormant, since childhood. She is now in the second year of trying a new course of treatment, which she said has not been of much help. “I actually seemed to be doing better before I started it,” she said.
Weinhardt said she would like people to understand the nature of MS, which may not be visibly evident to onlookers. A young woman used to a busy life, Weinhardt has found her increasing limitations difficult to accept and adapt to.
“People don’t think I look handicapped, but I very much am. Sometimes when we park in a handicapped space, people can give a look that says they don’t see any disability. There are times when I know I am holding up a checkout line, and I don’t like when that happens either,” she said.
She asks that people remember suffering may not be easily visible and to practice understanding and kindness. “Just understand that we are doing our best. We might look OK, but the disease takes away your ability to walk, run, dance, to speak normally or function as you’d like,” she said.
Weinhardt said her daily mantra is “My life is mine.”
“It’s doesn’t define me,” she said. “I wish it were otherwise as it makes life harder, and I think about things like ‘is this the way I want my family to see me the rest of my life?’ No, and I don’t know if there will be a cure in my lifetime. MS won’t kill me, but it will always be here.”
To learn more about MS, visit the National Multiple Sclerosis Society website at www.nationalmssociety.org.