Apple is now featuring Proloquo2Go on their accessibility front page.
http://www.apple.com/accessibility/
Proloquo2GoToo 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
Home alone last night. Potty before bed. Stuck. Could not get up from toilet, even with walker/riser. Cried. Weaker. Slid to floor. Walked on knees down hall to bedroom. Hardwood on meatless knees. Bed too high. Found towel in basket on floor. Put under knees. Comfort. Drag phone from night stand. Press redial. Lew answers from grocery store parking lot. Hears my breathless cries. Coming home. I wait on knees.
Born in the Spring
Hallelujah to the Sun
Hello world of Life!
You breathe in me to Sing
Wind and sun and purple storm
Every sky can lift me off
Dance me like in Heaven
—————————–
A burden from the start
Another mouth to feed
Anchors down
Feet on land, head at sea,
The sailor waits it out
His little captives serve on deck
While his big resentment sleeps away
Sinking deep
A life gone bad
A mind gone overboard
And the captives feel at fault
Stealing freedom
From the blame
Finding silence
From the lies
I have many times escaped
The unreality
of the fucked up shit
around me flying
And in my hiding
I have kept some happy safe
Many years
Rose above
But toxins stowed
Embedded in my cells
Hell oh world of Death
Slither in me strangling
Gravity, balance, Ability
Your goal relentless
Strip me naked
Wear me down
To bones and begging
Shove your face
Of shit and ugly
Up against my glass
I will bathe in sunlight
Overflowing from my cache
Of truth and peace and happy
And you one day
Will fall away
-kara
I am so very far from perfect.
It is the mistakes that make up my life.
It is a spider’s web, rather than a solid path.
Aiden is the sunlight on me.
I needed to get out of here that day
when the tempest boiled,
but escape is no longer possible
in this state of body.
This body keeps me.
I endured my head exploding.
The thunder echoed, the rains rushed out.
I screamed as I spun, wringing dead my hope.
I threw my legs, one by one,
toward the nearest shelter,
safe and distant unconsciousness.
-kara
The MND Association has just launched the first ever UK broadcast ad created to raise awareness of MND. The ad, which is currently being shown at over 50 independent cinemas across England and Wales, features Sarah Ezekiel, a woman I know who has ALS (called MND in the UK), like me. She was diagnosed with Motor Neurone Disease in April 2000 at the age of 34. She was seven months pregnant and didn’t know anything about MND. An actress plays the part of Sarah. The actress’s head is superimposed on the body of Sarah.
More information about Sarah and the Sarah’s Story campaign is at: www.sarahsstory.org.uk
The Making of Sarah’s Story video is really worth watching. Not intended for persons under age 18. If you are over 18, click the link below:
http://www.veoh.com/videos/v17354169qp6PYKkD?confirmed=1
It’s never a good day when it starts by shitting my pants. There’s never much warning, and not enough muscle to hold it. I must open, get through, and close one child gate, then another. Then, with two hands on the single hand rail, slowly, and so carefully, lift one foot, then the other, up the stairs. The bathroom: as far away as Mecca. I don’t make it in time. I shit my pants on the stairs. This is becoming a common occurrence.
Eleven minutes on Nautilus recumbent bike. Felt like thighs would spontaneously combust! Feel good now. Must get into daily routine again. Legs are wasting. My last straws. Was stuck in middle of living room floor Saturday night. They failed me. I failed them. Too much time at computer… on my ass. Move it or lose it. That’s the rule when motor neurons are dying up. Told Rosa to kick my ass, make me ride that bike everyday. Love that bike. Peddle-powered, comfortable, sturdy.
I dreamed last night that I needed to speak in a situation in which I was alone and the person I had to speak to did not know me or that I had anything wrong.
I was so worried about opening my mouth only to make “uhhh, ahhhh, wuhhhh, mmmuhhh, ehhhhhhhhh” sounds.
For some reason, it was very important that I speak clearly to this person. I concentrated so excruciatingly hard, focusing and drawing all my energy to the muscles of my mouth.
I fully expected to only hear my usual non-verbal braying. And at first the words were just fat globs of blubbery sound, but as I continued, the words began to take shapes… my mouth was in control… my speech became beautiful.