Returning to the scene where the defeated creature lie dying on the rocky shore, his mythic proportions diminished as we came near. I was fooled. Perhaps a foot and a half if stretched, nose to tail. A curious man opened the belly, and asked “was he a farmer?” when all the fresh produce poured out.

“He’s dying. Leave him in peace.” I pleaded. And the body disappeared, leaving just a shark head. Then the head became a large floret of bright green broccoli with a mouth opening and closing. I woke up and was happy I had finally slept enough to dream.

-kara

I don’t know what you want
They say
Calm down
They say
Just tell me what you want
They say
I can’t help you
They say
Until you tell me
What you want
And they stare at my mouth
See nothing else
Head jerking!
Toes pointing!
Eyes screaming!
Gestures
My language
Hear with your eyes and your mind!
Language is so much more
Than words!

Still they stare at my mouth
Waiting

-kara 8/27/10

I will step out of the way
of helpless bitterness
from those I cannot fix.
I wish you the best.
Wish you happiness.
Wish you would figure it out.
Wish you would turn your back
on misery.

All I can do
is yet to be seen,
and is in my hands.
I cannot carry your anger
anymore.

Will take my own advice.
Glad I wrote it all down
to read one day
in time to save myself.

-kara

I scoot my chair up to the gate, hang my head over the bars, and hope he will come over and hug me. He rarely does. I try to schedule time for the aide to bring him to me and sit him on my lap. But there is little time. Why does it take all damn day for the aide to take care of me? Sponge baths in the kitchen are laborious, but 2+ hours is ridiculous. It seems my days are merely a job and I am just the subject of that job. I’m a limp product, being lifted, positioned, dressed, pottied, wiped, fed, undressed, washed, dressed, fed, pottied, wiped, fed, pottied, wiped, fed, lubed, oiled, maintained, but never driven. I start up every day, but go nowhere. I see the sunshine only thru windows. I am never taken outside. It’s too much work.

I am 90% maintenance, 10% human, and find myself asking, “What kind of life is this?”

-kara

We do require that patients who receive wheelchairs from our loan closet be in the process of getting a custom chair funded by their insurance.  Our loaner chair is meant to be something that is used while you are waiting for your chair that is on order.

Funny… my $$ donations didn’t have rules and requirements attached. I thought my donations would be used on ANY pALS in need. So, people who have to wait for their chair to be ordered, or those without insurance, or who cannot afford the co-pay, cannot borrow a wheelchair from ALSA Greater New York. How exclusive, and just wrong! I will not be donating my equipment to ALSA. There are other organizations without such rules.

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.

“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

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