Kara Lynn .NET Blog

Kudos to Central Hudson Gas & Electric. They restored our power in less than ten hours today. Less than twelve hours Wednesday. These outages were nasty! Wires dancing with sparks across ice-covered roads, trees bowing down in everyone’s way, snow that just would not quit! Good job you men and women of the power companies, braving freezing cold, impassable roads, and fire-spitting live wires! You are heroes! Big hugs to you all!

Thank you Starbucks for the warm soy latte that Lindsay put in my feeding tube today. Thank you Lindsay! Tubed coffee gets me really high! Thanks Lew for going out for coffee.

i am sick to death of the torture that eating is. i am sick of having food shoved into my face, instead of my mouth. i am sick of your abuse lew. i am sick of trembling in fear when you violently tubefeed me. i am sick of you. come take my shirt off so i can go to bed and starve until i die.

-kara

“Medicare Would Rather Buy $8000 Computer than $150 iPhone App”
Read post on GIZMODO The Gadget Blog.

“This is a very powerful article. As the cost of helpful technology drops, companies are finding it hard to compete and keep up.”
Read post on A Jew in Reindeer’s Clothing.

Chris Parandian says:
“insurance companies would rather spend $8000 on a bulky PC device that requires disabling most of the functionality of the PC instead of $300 on an iPhone that can change someone’s life.”
“we’ve lost two family friends to A.L.S., this is an outrage…”

“ALS Is Front-And-Center In The New York Times Again!“
“This time there is an excellent article on covered technology, ALS, and common sense (and how they don’t converge). People with ALS have much to contribute to the discussion of healthcare reform and healthcare delivery.”
-ALS Advocacy

“Need another reason to hate insurance companies? Even their computers suck.”
-LiVEJOURNAL

This one is my favorite:
“The NY Times listens to those who struggle to use their voice…”
-All Together We Can

“Medicare/Medicaid won’t pay for the iPhone or the app because the iPhone has more than one function. It can be used for purposes other than treating a disability, so they won’t cover it. This is absolute insanity.”
-I4U NEWS

“Insurers Fail To Keep Up With Speech Technology, Deny Funding For Devices That Multi-Task.”
-Medical News TODAY

“Woman replaces $8,000 medical gear with iPhone”
-Telecom Asia
my note: I actually did unlock my $8,000 speech generating device for $45. I still found it useless. My home computer is an ordinary Mac Powerbook. After my disappointment with the dinosaur-like device that Medicare and my secondary insurance provider approved and paid for, I footed the bill myself to turn my own computer into a fully functioning AAC device complete with dual switch access; a superior layout program for customizing or designing my own on-screen keyboards, functions, mouse behaviors, etc., all accessible by any input device or by various scanning methods; a switch program to run all the scannable keyboards/panels; an excellent communication program for speech; some of the highest quality voices to use as my voice; an on-screen keyboard program with the most amazing and intelligent word/phrase prediction and completion I have ever experienced. The result was a great computer that is also a highly sophisticated AAC device. I spent less than $900 to turn an ordinary computer into an alternative access speech generating device. That was two years ago. Since then, I purchased an iPhone and an app called Proloquo2Go. This is what portability is all about!

“Text-to-Speech Technology Reaches an Inflection Point”
-Bits Blog, New York Times

-kara

Aiden and I appear on the front page of the NY Times today. I’m using my iPhone to speak while snuggling with my beautiful boy who uses his iPod Touch to play music, videos, educational games, and slowly, but surely, to communicate with Proloquo2Go!

This is an important article that addresses Medicare’s reluctance to recognize new technology (and great cost saving) for people with speech impairments,.

Full article is here:
http://www.nytimes.com/2009/09/15/technology/15speech.html

-kara

Proloquo2Go in the news:

Story and video here.

My nephew Josh will walk to raise money for his local ALS Association chapter in Atlanta on November 14, 2009. I have friends with ALS all over the world. I am so touched that Josh will walk in my honor. The ALS Association provides much needed services and equipment to patients and their families. My sister Kelly raised over a thousand dollars for our local New York chapter in just a few days! Way to go Kelly! Rock on Josh!

Sponsor Josh at his Personal Fundraising Page

It is my last thread, indeed.
My only connection.
My only method.
My lifeline.

I cannot let it fail me.
Where humans have.
Technology,
I commit to you.
Any price,
I will pay for you.
Respect you.
Love you.

You understand me.
You shine for me,
And love that I adore you.
I get you,
And you give so eagerly.
I bathe in all your loving power.
You love me back.
You never do me wrong.

Technology,
You stayed with my dying body,
Long after others walked,
Went on their way.

Technology,
You have always been on my side.
And you are the last one standing
by me.

-Kara

Thanks to Augmentative Alternative Communication on my iPhone, I will say more indeed! Yes, there’s even an app for that!

Apple is now featuring Proloquo2Go on their accessibility front page.
http://www.apple.com/accessibility/

• Proloquo2Go
  Assistiveware has released Proloquo2Go, a powerful, portable, and cost-effective Augmentative and Alternative Communication (AAC) application for iPhone and iPod Touch. Learn more

Too tired to move
Moving is work
So much work

Too hungry to eat
Eating is work
So much work

Too worn out to try
Trying is work
So much work

Too damaged to type
Typing is work
So much work

Copy and Paste

-kara