“Shut Up & Cure ALS” – Day 5

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 take for granted.  I invite you to take 30 minutes or even 5 and not talk.  Witness the challenges and the new emotions it brings to you.

Of alIMG_7003fbl the things, ALS takes away from patients, the ability to open your mouth and speak might be the most emotionally devastating.

I have experienced slight changes in my speech over the past few months, especially when I am fatiqued.  I have noticed decreased volume in speech, changes in the quality of my voice & an increased “nasally” sound.  At times it’s really hard to say my name, Lorri.  It comes out Rori.  I am getting to the point where, when someone says, “Is it, Rori?” – I just say yes.

At times, I am using a voice amplifier which reduces the fatigue & strain when talking and increases the volume of my voice.  The headset brings me back to my teenage years working in McDonalds’s drive thru.  Ha.

The changes in speech that result from muscle weakening is called Dysarthia.  The rate of progression of dysarthria in ALS can vary greatly from person to person. Eventually, however, everyone with ALS experiences some degree of dysarthria.

I had been planning on recording my voice for the past year and kept putting it off knowing it would be an overwhelming emotional task.  However, the changes I recently noticed, motivated me to do it last month.  The “voice-banking” allows me to have a unique personal synthetic voice that is representative of my own.  Voice banking consisted of recording 1600 specific phrases that were provided to me.  My synthetic voice definitely sounds more robotic than my natural speech, but at least it sounds like me.  I can use my synthetic voice now with a “text to speech” app on my phone or Ipad.  When I lose the ability to type, I can use the voice on a speech generating device that is driven by a laser-guided mouse.

I’ve already decided that after my week of silence, I will begin “message banking.” I will record personal messages to my family and friends so that they will hear my original voice on special occasions.  For example, I will record a message to my sons for them to hear on their wedding day.  I will record an audio & video message to my grandchildren in case we never meet.

The loss of the ability to speak is psychologically and emotionally challenging.  This is just one thing that ALS steals from patients.  Here’s a preview of my own synthetic voice.

Hugs,

Lorri Carey

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


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.