ALS: It’s My Story, Too

by ALSN Staff on Mon, 2012-04-09 09:42

An MDA online feature captures stories from the families and friends of people with ALS

Article Highlights:
  • For the second year during National ALS Awareness Month in May, MDA's ALS Division will offer the online series ALS: It's My Story, Too
  • As a companion to ALS: Anyone's Life Story, this interactive feature provides an outlet for spouses and partners, children, friends, relatives and co-workers to share how the disease has impacted their lives.
  • The article provides a selection of postings submitted for the 2011 It's My Story, Too.

ALS doesn’t just affect the person with the disease — it has a profound impact on those who care about that person, too.

On MDA’s website during May, an interactive feature, "ALS: It's My Story, Too," provides an outlet for spouses and partners, children, friends, relatives and co-workers to describe how the disease has impacted their lives.

Below are several postings from MDA’s 2011 "It's My Story, Too." Sadness and loss are common themes, but so too are inspiration and hope. (To participate in "It's My Story, Too," read below.)

My Father’s Voice

"When I was a child, I loved to climb in my father's lap and lean my head against him and listen to his deep voice resonate in his chest. Of all of the things that ALS has stolen from him, I miss his voice the most. When he 'talks' to me now and I think back on what he said, my mind plays tricks on me, and I remember his words in that voice that has been silent for over a year."

Gaining a Hero

"My mother was the most amazing woman, 'SuperWoman.' I remember her just being the epitome of an independent, hard-working woman/single mom. She was my best friend, and I was her world. I would meet a person for the first time, and my mom would have already told them everything about me and how great I was. But when I was 8, she got what started off as a limp and over the time span of four years got worse, until she passed away when I was 12. I had lost my best friend. But she became my hero."

Remarkable Courage

"My father was diagnosed with ALS on Valentine's Day. He is still walking although with a little slower speech that's a little slurred. He also has some muscle weakness, but his strength and his courage are remarkable. I admire him for not giving up and living every day to the fullest. He is my IDOL!"

Providing Strength

"My baby sis, Vadia, was diagnosed March 16, 2011, with ALS. We noticed symptoms appearing as early as last spring, but by Thanksgiving of 2010 the entire family knew it was something serious as her speech became slurred. Since that time, she can no longer speak and her muscles have weakened a great deal. Vadia has incredible faith in Jesus and is happy each time she is given a new sunrise to enjoy. She provides strength to the family to walk with her through this journey."

My Hammy

"'Hammy' is my stepfather and an extraordinary human being. Diagnosed with ALS in July 2010 at the age of 52, he was told by doctors to go home, prepare a will and enjoy the time he had left. But Vance is no quitter. He's fighting this disease like the hero that all four of his daughters regard him as. Like it or not, ALS became a part of our lives, and we were given two choices. We could wallow in sadness, or we could follow Vance's lead and fight. It was not a difficult decision to make."

ALS Community Helps

"Starting in May 2009, my father began experiencing progressive weakness in both of his legs to the point where he eventually lost the ability to walk altogether. After months of visits to neurologists, chiropractors, even oncologists, we were officially given the diagnosis of ALS three weeks ago. The ALS community makes it easier to live with this debilitating disease and I thank every one of you for that."

To tell your story or read the stories of others, visit MDA's ALS Division website this May and click on "Anyone's Life Story." (Note: The feature will not be posted until May.)

For more information about this year’s ALS Awareness Month features and events, both online and local, see MDA Helping to Raise Public Awareness of ALS During May.

ALSN Staff
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