Every Thought Counts

Caroline Tredway’s sister, Nell Hardy, is currently living with ALS. In response to her sister’s #EveryDropAddsUp story, Caroline submitted her own essay, titled  “Every Thought Counts.”

Every Thought Counts

Picture, for a moment, that you’re in a straitjacket. You can’t move any limb to free yourself. All day and night long.

That’s how I imagine my younger sister Nell has felt over the past seven years as she battles the biggest foe of her life: Amyotrophic Lateral Sclerosis, or ALS.

I think of Nell when I do the simplest of things that are out of reach for her.

When I get out of bed in the morning.
Stir my coffee.
Call a friend.
Swat a fly.
Turn my head.
Advance my Kindle.
Walk.
Talk.
Type.
Chew.
Stretch.
Clap.
Hug.
Breathe.

Nell is cared for by amazing nurses 24/7. She breathes with the help of a ventilator. She’s in her behemoth of a wheelchair, nicknamed Bessie, from morning till night—most times with her companion Chihuahua Rico on her lap. The only way she can communicate is with her Tobii Dynavox speech-generating device. Electronic gadgets have become her life line. So has her gastric feeding tube through which she receives her daily meals and meds.

And yet still most days she remains positive that a cure for this heinous disease is within reach. I hope and pray with all my might that she’s right.

Please think today, when you make the simplest of movements, what it would be like if you couldn’t. And then think about helping Nell and all pALS (people with ALS) everywhere break free from their straitjackets. All it takes is one quick click to donate.

They can’t do it, but we certainly can.


Each contribution to the fight against ALS – no matter how seemingly large or small – adds up. Please consider making a donation this August, and every August, until we have a cure. Then, tell your friends why the fight against ALS matters to you and encourage them to make a contribution, too!

4 comments

  1. My oldest son Charles died of ALS on May 22, 2015, about 2.5 years after he was diagnosed at Johns Hopkins Hospital. Would the ALS Association like to test me or my other son for genes that contribute to ALS?
    His mother died in 2011 from cancer. I am ready. I would need to ask his younger brother.

    Please advise.

    Charlie Calvert

    Like

    1. Hi Charlie – Thanks for your comment and I’m sorry to hear about your son. The ALS Association does not conduct genetic testing, however you can contact your neurologist to arrange testing for ALS. Your local ALS Association chapter will be able to refer you to one in your area. You can find the contact info for your nearest chapter by selecting your state from the drop down menu here: http://www.alsa.org/community/chapters/

      You may also want to read more about ALS genetics here: http://www.alsa.org/research/focus-areas/genetics/

      Like

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