“Shut Up & Cure ALS” -Day 4

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 night I was reading through some comments on Facebook and someone had mentioned “She looks too good to have ALS, she must be misdiagnosed.” They were referring to me & my blog profile pic.  It made me wonder how would I answer, “What does ALS look like?”  I remember when I wasIMG_1643fb first diagnosed, searching the internet for pictures & videos to answer that very question.  I was so anxious to see exactly what was going to happen to my body and how it would look.  I never found anything that answered my curiosity.  So, ultimately I gathered that ALS must be too horrific for people to document it.  Now I realize, “What does ALS look like?” is a tricky question to answer because ALS looks different on everyone.

I also wondered if am doing a good job educating others about ALS?  You might look at me and say, ALS doesn’t look too bad, what’s all the fuss about?  Consider most patients live only 2-5 years and I’ve had it for over 12 years.  I am a rare slow case.  But in the spirit of educating and sharing, I decided to take you “behind the scenes” today to show you little more of my ALS.

In ALS the motor neurons that travel from the brain to the spinal cord to the muscles, die off.  When the muscles quit getting those signals, they waste away and movement is lost.  This happens with all voluntary muscles which is why, people with ALS may lose the ability to speak, eat, move and breathe.

I have limb-onset ALS, and the weakness started in my right hand.  In the picture I am trying to open my hand and fingers all the way.  That’s all the movement I have.  You see the restinIMG_1664 fbg hand splints I wear at night so that my fingers have a chance to lay flat while I sleep. For me, my hands, arms & shoulders are the weakest.

Since ALS affects all muscles, the diaphragm is included.  My diaphragm is weakening so it is not moving down like it should and that’s affecting my breathing.  That’s why I sleep with a Bipap machine.  The machine senses when I am breathing in and pumps additional air into my lungs.  Essentially, the machine is helping my breathing muscles do their job.  Respiratory weakness is also affecting my speech at times, more on that later this week.

I hope this helps illustrate “What ALS looks like?”, at least on me.  My changes are minor compared to those in later stages.  I might get a little afraid sometimes but I can’t complain.  Well, I could.  But I won’t, because I am grateful for all the abilities I do have.

I’ll continue to blog here daily during my “Shut Up & Cure ALS”.  Four days down, 3 to go!   If you haven’t already: Become an ALS Advocate.

Hugs,

Lorri Carey

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.