All posts by Lorri Carey

For The Love Of The Lab

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I've woken up every day for the past 4,595 mornings with ALS in my face.  Whether it's waking up with a cramp in my leg, trying a few times of rocking to get out of bed or flipping off my mask of my BiPap machine.   Before I have a chance to fully awake and form a thought, there's ALS.  That fatal disease that has no cure and no treatment. Those who know me, know I'm grateful.  I believe I am one of the lucky...
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“Shut Up & Cure ALS” – Day 7

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Today is my last day of silence.  I am definitely looking forward to talking tomorrow.  This week has been difficult.  Not difficult with physically not talking, but just the strained social interaction with others.  Even with all the love & support coming in from you all, I still felt disconnected and alone. Since ALS limits patients physically, they often feel isolated enough.  I will now begin praying that each patient who has lost their ability to speak has access to some form of speech generating...
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“Shut Up & Cure ALS” – Day 6

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YES, I am still SILENT!  I'm starting to wonder if I will even be able to talk on Sunday morning.  What a strange feeling.  Last night I went to a comedy club and that was very tough!  I noticed I slapped my leg a lot, instead of laughing out loud.  This week I've been reminiscing about how Kids4Cure got started.  Let me share ... It was a moment that changed their life forever at 13 & 11 years old.  After I received a second confirmation...
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“Shut Up & Cure ALS” – Day 5

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Day 5 of SILENCE.  I think the boys in my house are liking my silence way too much.  As I feel more left out and alone, they seem to be quite happy.  Ha.  What I really miss about talking is being involved in a conversation and being able to share a thought as soon as I have it. The silence has me thinking more about communicating in the future and the struggles others already have.  I think talking is one of those things we all...
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“Shut Up & Cure ALS” -Day 4

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It’s hump day and that means, I only have 3 more days of silence!  Remembering to stay silent has not been a problem. It’s just completely frustrating.  When I need to communicate, my family is telling me they can’t read my lips. I actually looked in the mirror and “mouthed” something to myself to see what it looked like.  I couldn’t read my lips either, ha! Apparently, my upper lip is not moving too good making it tough to tell what I’m saying. So last...
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“Shut Up & Cure ALS” – Day 2

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Today has been quiet. :)  The week definitely seems like it’s moving slower with me not talking.  All day today, I kept thinking it was Tuesday.  I’ve been completely silent all day, even with going out to meet my Dad in the therapy pool and the grocery store.  I ordered turkey from the deli by writing a note in my phone.  I left an “ALS Awareness” card with the deli lady & cashier.  I also left one in the locker room at the Healthplex.  I...
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“Shut Up & Cure ALS” – Day 1

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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...
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“Shut Up & Cure ALS” Week of Silence Intro

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"During my “Shut up & Cure ALS” Week – I am not talking for an entire week …Yep, 7 days, 168 hours,  10,080 minutes.   I’ve had ALS for 12 years & I’m lucky to still have the ability to speak.  So why am I going silent???" For the past 12 years our family has been trying different ways to raise awareness for ALS.  We’ve all spoken up and reached out in many ways.  We’ve been at it for 12 years …educating others about ALS and...
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