(T.J.) Parker basically
wanted a voice-activated remote control to change channels on his
TV and stereo. He probably couldn't have imagined at the time how
much things were about to change.
VentWorld.com first found out about him at
the end of March when he was vying for (and won) a mini color video
camera from X10, Inc. Mr. Parker wanted the camera to monitor the
progress of his pregnant friend, Angie, a good friend who helped
him through tough times after a diving accident in 1991 left him
paralyzed virtually from the neck down.
Parker today is a web developer, consultant,
and vent user pioneer. With a grant from The Able Trust (www.abletrust.org),
he also has started a small business repairing computers, and purchased
a web server that hosts more than 30 domain names with ongoing expansion.
He tells part of his story on his website, http://members.aol.com/TJPathome/,
about how his environmental control system called "Max® "
Designs) and the Head
Instruments) have changed his life, allowing him a certain level
of independence, from opening doors, changing television channels,
to even faxing letters, surfing the Internet, developing web pages,
and hosting sites on his server. In a recent conversation with him,
we discovered other parts of his story that reveal his energy and
passion. These have enabled him to overcome many physical and not-so-physical
obstacles, including state legislation that limits access to the
most appropriate equipment ("I've shook things up in Florida
and opened doors for others by working behind the scenes to get
programs started") and caregivers' stubborn resistance towards
listening to their patients.
Knowing What Works for Each Vent User
"The problem many people on a vent have
is that they let their doctors sometimes tell them what to do too
much," he states. "Everyone on a vent is different. I
know what is comfortable for me. If I need more, I crank it up."
While he doesn't advise others to arbitrarily change their vent
settings, he feels that many doctors don't take the time to find
out what is comfortable for the vent user, and the vent user may
be afraid to challenge the doctors' orders.
One explanation, offered by vent users interviewed
for this article, is that vent users resist being more assertive
because their life literally depends on those who care for them.
If the caregivers aren't informed about all the treatment options,
particularly as it relates to equipment, new technologies, and techniques,
then the vent user may suffer needlessly.
Parker has investigated many treatment options.
At the time of this interview, he was using an LP-10
Bennett) but was going to switch to the LTV-900
Systems) When asked about treatment using phrenic nerve stimulation,
he responded: "It could be fine for some people, but when I
tried it, it didn't help. My left side wasn't working, and I couldn't
sit up or eat, and still had trouble breathing."
Max, the Head Mouse, and the Internet
Parker speaks enthusiastically about the
way Max and the Head Mouse, especially in the Internet age, have
changed his life. What started as a basic computer system to help
him control his environment has become much more. After referrals
through his psychologist and a vocational rehabilitation organization,
Parker met Dan
Deignan at Multimedia Designs. Six months and much paperwork
later, Parker started using Max. At first, he was trying to use
a speech-recognition program to interface with the computer, but
this could get tiring (and slow), and he wanted to use the computer
without his speaking valve. "Dan found the Head Mouse."
When VentWorld asked about other input devices, such as dictation
programs and sip-and-puff, Parker said that he finds the Head Mouse
The Head Mouse is a system that combines
a dot he puts on the tip of his nose with a sensor that tracks the
dot. Navigation and input is accomplished by the user's head movement.
The Head Mouse costs about two thousand dollars, and the complete
Multimedia Max system is around $8,000, which does not include the
Head Mouse, but has "all the bells and whistles" for environmental
control and computer control plus training. Parker is the technical
support contact for Multimedia Designs Inc. Anyone with questions
about Max (or the Head Mouse) can email him at TJPathome@aol.com.
website (that he created and manages), Parker shows visitors
he uses the Head Mouse to navigate, type, and perform the same
function as one would with a keyboard and mouse. In fact, he states
that the Head Mouse allows him to navigate and click faster than
most people. In addition to web design, he's working now to interface
the navigation with DirectX® (Microsoft), a software technology
used in the majority of PC games today. An avid race car fan, Parker
is looking forward to the day he can play racing video games using
The Internet has opened up a new world for
Parker, and he is seizing this opportunity. Many have commented
that the Internet has a potentially enormous impact on vent users
by bringing their friends and the world into their homes. Also,
it provides an alternative communication medium to speaking, which
can be difficult for some. The combination of the Internet and enhanced
communication tools may be an effective way to combat the isolation
that vent users feel. Parker is eager to develop and assist in developing
new technologies for himself and for others with physical challenges,
as well as to pave the way for vent users to take an active part
in their own care. If what he has done so far is any indication,
then things certainly are going to happen.
Mr. Parker interacting with Max® (from
Multimedia Designs), and other of his environmental control
systems at home.