Thursday, October 12, 2017

What Is Life Like with ALS?


I have Ehlers Danlos Syndrome and it can make being a mom hard.  My kids know that there are days that Mommy has lots of owies and needs to rest.  I can't do a lot of activities with them like take them to the park or go for walks with them.

My EDS has given me a small taste of what it's like to be a mom with Amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig's Disease).  Sarah from Speed 4 Sarah was diagnosed with ALS when she was 33 and her daughter was just two years old.


ALS is a progressive neurodegenerative disorder.  Early symptoms include muscle cramps and twitching, weakness in the limbs, and difficulty swallowing or speaking.  As it progresses, the muscles atrophy and eventually become paralyzed.  The survival rate is generally 2-5 years after diagnosis.

In an article for CNN about her journey navigating motherhood with ALS, Sarah writes: "At first, I was drowning in my inability, in all the ways I thought I would fail her as a mom.  Then something unexpected started to happen.  The things I couldn't do for her, she started to do for herself.  When she was two, she dressed herself.  By age three, she was opening doors for me and helping with groceries.  At 4, she could make a quiche, and these days, she folds laundry and cleans her room with only the slightest bit of prodding."

I'm teaming up with the ALS Therapy Development Institute and Linqia to raise money for ALS research with the #whatwouldyougive campaign.  It challenges people to temporarily give up an ability such as using their arms or legs to get a small taste of what life with ALS is like.


Are you ready to join the fight?  Donate here and share the #whatwouldyougive campaign on social media and let's #endALS.  Click here to learn more about ALS and who it affects.

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Support ALS research and join the #whatwouldyougive campaign: https://ooh.li/69de6e4 #sponsored #EndALS @ALSTDI @sunshineNspoons
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Together we can fight ALS!