Mind Muscle
by Erin Brady Worsham
On Sept. 7, 1994, my husband, Curry, and I returned home from our
appointment with the neurologist. We were stunned, shocked by the
diagnosis of amyotrophic lateral sclerosis (ALS or Lou Gehrigs disease)
and the prognosis that I had three years to live.
I was 36. The ultimate procrastinator, I had done nothing with my
life. No family, no successful career nothing lasting or memorable.
I dont care to remember those first dark hours, filled with terrifying
thoughts of my steady decline into incapacity and death.
Who's Stephen Hawking?
Late that night the phone rang. It was an old friend we hadnt heard
from in a long time. Hes a science writer.
Upon hearing our news, he immediately said, "Isnt that what
Stephen Hawking has?"
"Who?"
"Stephen Hawking, the great British physicist. He wrote A
Brief History of Time. Hes had ALS for a long time,"
he reassured us.
Of course, wed heard of A Brief History of Time. Who
hadnt? It was a best-seller. And Hawking had written it on a specially
adapted computer.
That night, two rays of hope began to pierce the darkness of my soul.
The first was a certainty that no one could predict the number of
my days in this world, and the second was the realization that I could
still make something of my life!
That realization bore fruit (literally) nine months later, when our
only child, Daniel Curry Worsham, was born. Now, more than ever, I
wanted to leave my mark, as a legacy for my son.
I typed the first words on my Liberator augmentative communication
device (made by Prentke Romich) with an infrared head pointer in December
1996. The head pointer, in combination with the Liberators icon-driven
language, Minspeak, was very fast.
Using the Liberators notebook feature, I began writing a journal
for Baby Daniel. Looking back on those early entries, Im sure Daniel
will think his mother was obsessed with food. Just because I had trouble
eating doesnt mean I wasnt interested in what everyone else had
on their plates!
Pre-ALS, I was an artist, an undisciplined (aka lazy) artist. In
the summer of 1999, Curry installed the MIKE software (Prentke Romich)
that allowed my Liberator to interface with our computer and move
the mouse.
By this time, my neck had weakened and I was using a P-switch to
operate the Liberator. Curry tapes the sensor between my eyebrows
and I make hits by scanning the keyboard and moving my brow.
Second Chance
 |
Erin Brady Worsham |
Given a second chance to express myself visually, I set to do so
in earnest and learned my new medium of Microsoft Paint.
Fast forward to 2004, nine and a half years after my diagnosis. Im
a freelance artist and writer. My one-woman show, Artist Always, is
touring the country, co-sponsored by Vanderbilt University Medical
Center in my town of Nashville, Tenn., and the Society for the Arts
in Healthcare. I write a quarterly column in the MDA Messenger, the
newsletter for Middle Tennessee.
On occasion, I give talks with the Liberator about disability issues
or my art. My illustrations have appeared in Quest, including those
for this article, and I have work in the MDA Art Collection.
Most important, I wake up each day with a sense that there are things
to be accomplished that day. Priceless!
I was curious to see what other people with neuromuscular diseases
were doing with their computers or augmentative communication devices.
I was both surprised and inspired by the pursuits of the following
people, whom I met via e-mail. Let me introduce them...
Steven M. Best: Writer, Businessman
"Work is a focal point, and when focus is joined with passion,
it is therapeutic."
Steven M. Best has been through several incarnations in his 53 years,
from military intelligence analyst in Vietnam to chiropractor for
20 years and, finally, to published author of When Philosophers
Were Kings, a historical novel thats garnered three national
award nominations.
 |
Steven
Best (lower right) with family |
Best, who learned in 1975 that he had distal muscular dystrophy,
retired from his thriving chiropractic practice 20 years later, but
he wasnt ready to sit back and do nothing.
"People must do something with their lives, with whatever abilities
they possess," he said. Best had always loved writing and received
good grades in college. "Giving up my profession sent me back
to my love of history, and the discovery of a family legend previously
unknown to me."
Best, who lives with his family in Powder Springs, Ga., worked for
nine years and did extensive research for When Philosophers
Were Kings, a fictionalized account of his ancestors participation
in the Civil War.
Because hes unable to operate a keyboard, Best uses voice-recognition
software. He originally used Dragon Dictate, but found it extremely
tedious. He now uses Dragon NaturallySpeaking. (See "Talk
to Type.")
In addition to his writing, Best serves on the board of Best Enterprises,
the largest independent telecommunications wholesaler in Minnesota
and the four surrounding states.
Hes already hard at work on his next book. "The more pain and
losses you experience in life, the more important it is that you have
an external focus," Best said. "Writing has been that for
me."
Kathie Hormby: Mother, Student, Writer
"Before the AAC, I was a bored TV watcher. It has opened
the world for me."
Kathie Hormby, 54, of Nashville, found she had ALS in 1988, shortly
after her son, Tom, was born. She began using an AAC device in 1997,
when Tom was 9.
Hormby uses Words+ hardware with a personal computer. The hardware
consists of two switches, which she holds in her hands and uses to
send Morse code to her PC. The left hand is dash, the right is dot.
The hardware translates the Morse code into English.
 |
Kathie Hormby with family |
"I can just squeeze my hands hard enough to operate the switches,"
Hormby said.
Before she got her AAC device, all she could do was "issue orders,
very short orders." Hormby was so desperate to communicate, she
learned Morse code in one afternoon!
"The first time I used the AAC, I was able to ask Tom what he
was reading. And we had a conversation. I [think] that says it all,"
she said.
With E Z Keys software, Hormby can operate in Windows, which she
uses for e-mail, reading and writing. In her years as a lawyer, she
wrote articles for a law review, and now shes studying creative writing
in classes on the Internet.
Hormby feels that AAC levels the playing field between her and people
without disabilities online.
"I generally dont tell people Im disabled until the end of
class," she said. While she enjoys writing and wants to do it
well, she doesnt consider it a serious pursuit.
"My only aspirations are to survive and to dance at Toms wedding!"
David Whitenett: Licensed Mental Health Counselor
"It has been a very liberating and empowering experience
to have Reach and Dragon software available for work and personal
use."
Like many people these days, David Whitenett, 61, found his current
job on the Internet, through the Boston Globe newspaper Web site.
 |
David
Whitenett with wife, Brenda |
Whitenett, who was found to have a form of spinal muscular atrophy
in 1978, is a licensed mental health counselor and works in a mental
health clinic. His department serves chronically mentally ill adults
who are at risk for hospitalization.
"My primary work is clinical counseling with adults who have
a major mental illness such as schizophrenia or bipolar disorder,"
Whitenett said.
"At work, I do all progress notes, quarterly summary notes,
treatment plans, memos and letters with Dragon NaturallySpeaking voice-recognition
software," he said. He operates Dragon with a headset microphone.
Whitenett also uses REACH adaptive software, an on-screen keyboard.
"It presents an image of a computer keyboard on screen, and I
use my mouse to select letters," he said. "It also has a
word-prediction feature that I can use to make shortcuts in my word
processing."
Whitenett, who lives in Natick, Mass., has worked in human services
since 1987, in a mix of clinical mental health and rehabilitation
programs. Hes used speech-recognition software since 1996.
"Recently, my supervisor expressed relief that he could read
my documentation much easier than most of the program staff. That
made me feel proud of that accomplishment," said Whitenett.
Julie M. Jones: Writer
"I never really feel my disability when I am on my computer
using my Dragon NaturallySpeaking."
When Julie M. Jones started college in 1991, her preferred method
of typing her class papers was "hunt and peck." Not because
she didnt know where the keys were, but rather the SMA shed had
since she was 18 months old prevented her hands from spanning the
keyboard.
 |
Julie M. Jones |
All that changed in her second year at Orange Coast College in Costa
Mesa, Calif., when Jones became one of the first users of the voice
recognition software Dragon Dictate. Though Dragon Dictate was "primitive"
compared to the Dragon NaturallySpeaking she uses now, she could type
pages and pages without getting as tired as she did with "hunt
and peck."
Jones, of Fountain Valley, Calif., was an English major, which necessitated
the writing of many papers. But her real love was writing fiction
and poetry.
"The speech-recognition software allowed me to finish my school
work in less time so that I had more time for creative pursuits,"
she said.
She transferred to Chapman University in Orange and graduated with
honors in 1996. She finished her master of fine arts degree in creative
writing in December 2001, writing a novel, Ivy Trellis,
for her thesis.
"Dragon NaturallySpeaking allowed me the independence of typing
my own manuscripts, without need of a third party to take dictation,"
she said. Jones novel was nominated for the universitys Elizabeth
George Fellowship and the John Fowles Literary Award.
She is well into writing her second book, The Seven Sisters.
"I think its just a matter of finding the right editor with
the right publishing house at the right time," she said.
David Jayne: Advocate, Father
"The AAC system has empowered me to take part in a cause
that will improve the lives of thousands. That is incredible when
you think about it, isnt it?"
On Dec. 8, 2003, David Jayne witnessed President Bush signing the
Medicare Prescription Drug, Improvement, and Modernization Act of
2003 in Washington.
 |
David
Jayne |
The bill includes provisions for a two-year, three-state trial to
study the financial effect of loosening the Medicare "homebound"
rule. The rule stipulates that, in order to receive Medicare home
health services, recipients must remain within the confines of their
homes except for "infrequent or unique events."
Jayne, whos had ALS since 1987, has worked tirelessly to change
this rule. The trial, and some administrative changes, are due in
large part to his efforts, which cost him his own home health services
on several occasions.
Jayne, 43, lost the ability to speak 12 years ago and began using
an AAC device in 1994. Today he communicates with a laptop equipped
with E Z Keys from Words+. He operates it with a fiber optic switch,
made by Adaptive Switch Laboratories, attached to a pair of eyeglasses.
He activates the switch by moving his eyebrow. In bed he uses a switch
manufactured by Neural Signals, thats triggered by electrical activity
in a muscle.
"My AAC device has enabled me to found the National Coalition
to Amend the Medicare Homebound Restriction, NCAHB," Jayne said.
"I have made several trips to Washington where Ive given speeches,
done radio and television interviews, and met with senators, representatives
and legislative staff."
As effective an advocate as Jayne has been for the thousands of people
who depend on home health services, perhaps the most important role
in his life is that of father to Hannah and Hunter.
"My children have no memory of my voice. All of their recollections
are of a computer-generated voice," he said. "Having the
ability to tell my children I love them is beyond words."
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