“Shut Up & Cure ALS” – Day 1

Well I started my “Shut Up & Cure ALS” week of silence exactly at midnight last night.  I think from midnight to 1:00 a.m. was the toughest.  Something about NOT being able to do something,  makes you want to do it more.  Maybe it’s the “Lopez” rebel inside me.  Ha.  I was so afraid I would wake up, forget and start talking so I tied on an ALS awareness ribbon & had Paulie write “Don’t Talk” on my hand.  I found it ironic that I actually “bit my tongue” while I was sleeping last night – so hard it woke me up.  IMG_1510 fb

I want to make sure I do my normal routine this week.  I don’t want to avoid people, just want to live life and spread ALS awareness with people naturally.  You can see what I left the house with today.  I was armed with a pen, notebook with a brief description on it of what I’m doing, and cards that explain it along with contact info.  I really thought I was gonna miss singing out loud at church today, but it ended up being relaxing.  Lately I have been preoccupied on how I run out of breath by the 3rd song, so it was nice to just listen.  After church, I began facing some additional challenges. I went out to lunch with my mother, followed by a trip to Goodwill.  It was awkward not to speak to someone who is waiting on you and standing so close.  I felt so distant and rude not talking.  So after each transaction, I handed them a card so they would understand.  My mom was funny, I don’t think she realized she talked louder and slower to me as if I couldn’t hear.  She was also “mothering” me more thinking I needed more help with everything because I wasn’t talking.


So far this “Shut Up & Cure ALS” is going well.  I will say I feel a little disconnected from everyone here in the house.  It’s interesting to observe how others approach me (or don’t) without me talking.  A couple times today I felt it was more uncomfortable for the person I was with, than me.  That awkward silence for sure.  I’ll be blogging here daily during my “Shut Up & Cure ALS”.  Thank you for your support!  One day down, 6 to go!


Lorri Carey

P.S. If you missed yesterday’s post, click here!


Visit my son’s website, www.kids4cure.com to see how to “”Speak Up & Cure ALS” while I am silent.

  1. Become an ALS Advocate. (this is super easy & takes less than 2 mins)
  2. Donate.  (all $ goes directly to the ALS Association for research & patient services)
  3. Follow Us! Facebook, Twitter, Instagram
Lorri Carey
I’ve been living with ALS since I was diagnosed at age 38 in 2004. My family & I are active ALS advocates & fundraisers. My sons, Paul & Christian created a platform, Kids4Cure, at the ages of 13 & 11 to help find a cure for ALS. To date, Kids4Cure has raised over $800,000 for ALS research & patient services. I consider myself one of the “LUCKY” unlucky ones. I have been blessed with more years than most ALS patients. I am honored to advocate on behalf of those who cannot until we have a world without ALS.