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The value of a voice
For people living with motor neuron disease , the voice banking process can now begin with simply reading a picture book .
BY CAMILLE KAIL
“
Everything is changing .” These are the gripping first words of “ I Will Always Be Me ,” an online , digital picture book about individuals living with motor neuron disease ( MND ), the most commonly known type of which is ALS or Lou Gehrig ’ s disease . Written by New York Times best-selling author Jill Twiss and illustrated by award-winning artist Nicholas Stevenson , the book is told from the perspective of a person whose life is in flux , changed in an instant by a diagnosis .
MND , a fast-moving neurological disorder , robs individuals of their ability to walk , speak , swallow and eventually breathe . Although muscle function is inhibited , people living with MND are still able to see , hear , smell , taste and feel sensation in their bodies . Nick Goldup , director of care improvement at the MND Association based in the United Kingdom , likens advanced MND to “[ being ] left in a locked body .” According to the MND
PHOTOS COURTESY OF BORDERLAND