Those with ALS redefine what it means to be alive

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    My mother's journey with ALS

My mother's journey with ALS 08:45

Story highlights

  • CNN anchor Suzanne Malveaux shares her personal connection to the disease ALS
  • Malveaux's mother was diagnosed with ALS a year and a half ago
  • ALS is a fast-moving neuromuscular disease without a cure
  • Patients with ALS are eventually paralyzed completely but their brain still functions normally

With the tap of a toe or the blink of an eye, those with ALS are redefining what it means to be alive.

I have to admit it took some time to come up with that line and believe it -- to have that kind of positive outlook on this nasty deadly disease and the future.

Just a year and a half ago, my mother, Myrna Malveaux, 69, was healthy. Our family's matriarch, she was the one who was the life of the party, the trusted confidante but town crier of all family secrets, the glue that held my father, me, and my three siblings together.

When I was told she had ALS I honestly didn't know what it was. But then my sister described it to me over the phone and I had to pull over the car. It's a fatal, fast-moving neuromuscular disease that would paralyze my mother limb by limb. First robbing her of her ability to swallow, then speak, move and breathe.

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When that reality set in, I spent many nights in my home, crying on the floor. What enabled me to get up was that my mother accepted her fate with a strength and grace I'd never seen before. In anyone.

When she began choking on her food, losing her ability to swallow, she got a feeding tube.

When she lost her ability to walk, she got a motorized wheelchair.

    When she could no longer speak, she picked up a word board and started spelling out her conversations, still telling my father what to do.

    And finally when she lost her ability to breathe, she got a tracheotomy and ventilator to stay alive.

    Which is why the notion of what it means to be alive, for me, has completely changed.

    I've met people like former NFL New Orleans Saints player Steve Gleason, who now, at age 36, with ALS, is completely paralyzed. He uses eye-tracking technology to open doors, send e-mails, and tweet by blinking his eyes.

    I've also met Augie Nieto, the founder of Life Fitness gym equipment. The 53-year-old Californian is running a corporation, communicating and raising millions of dollars for ALS research, by tapping with his toes.

    So you can see where I might get my inspiration in telling their stories.

    Don't get me wrong, I know it's a devastating path to travel. Someone described it to me as "imagining yourself, sitting in a chair, and being completely duct-taped head to toe, with only your eyes left open. That's what it's like to have ALS."

    It robs you of your physical abilities but it leaves your mind and spirit strong.

    Being alive looks different. It becomes all about your emotional connections to those you love.

    My mother smiles when she sees her grandchildren, her eyes light up when you walk in the door, she relaxes when the sun shines on her face. These days our family is just about hanging out.

    Very little is known about how people get ALS. In 90% of cases it just happens out of the blue. It's considered a rare disease, in part, because patients don't live long enough to be counted. Right now there is no cure.

    I hope by sharing my own experience, as well as that of others, we can learn more together.

    Read more: Sharing the burden of ALS