Stan has kept busy since his diagnosis of ALS (Amyotrophic Lateral
Sclerosis). He has always been active with family and friends and his
many hobbies, including computers and technology, history, geography,
the outdoors and music. Since the onset of ALS and the subsequent loss
of control of his hands and arms, Stan has learned to use adapted computer
access and the Internet to continue some of his old hobbies while adding
new ones, from plant/animal identification to researching medical treatments.
Stan has been using voice recognition technology (ViaVoice
from IBM) to run all his computer applications in a hands-free manner.
This has been supplemented by a voice activated environmental control
system (Sicare Light
from TASH) that provides control to a TV, VCR, CD player, tape recorder
and telephone, among other devices. Although he has some dysarthria,
his speech has been consistent enough for reliable control of these
devices.
Despite the losses he has sustained, Stan has been able to stay in
close touch with friends and family members through email, even re-connecting
with those who live as far away as North Dakota. He has also kept in
contact with local friends, family and co-workers by sending messages,
articles, poems and pictures via the Internet, staying connected to
those he cares about in a powerful way.
In this video clip, Stan is using Via Voice to print email:
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Stan attributes much of his independence during his illness
to a few individuals who helped him stay connected through various modes
of adaptive technology. Without their commitment and expertise, he wouldn't
have enjoyed many of the options available today. A local physiatrist
(doctor of rehabilitative medicine), Dr. David Drobnicki provided preliminary
information and advice about computers and voice recognition software,
headsets, and all types of technology that are useful to people who
need to communicate in a hands-free environment. Through him, Stan connected
with the Muscular Dystrophy
Association, an organization that has a lending closet for sharing
some equipment and resources. Dr. Drobnicki also connected Stan with
the University of Washington Medical Center and the UWMC Assistive Technology
Service, both of which were valuable resources.
Two other significant people who helped research, set-up and operationalize
various tools for assistive technology for Stan include Ken Crandall,
a personal friend and local contractor, and Candace Ganz from Western
Washington University's Speech and Hearing Clinic. Both Candace and
Ken were instrumental in brainstorming and troubleshooting various voice
activated tools as Stan's disease progressed, and provided help with
the installation and use of the voice activated devices, as well as
tutorial sessions to ensure smooth operations.
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