IEEE Consumer Electronics Magazine - May/June 2021 - 80

Socioeconomic Impact
vary by incremental amounts. In general, he
says, " the human aspect to these tasks are not
replaceable at the moment. "
TECHNOLOGY IS NOT ONE SIZE FITS
ALL
There are barriers to the use of technology
for people with MND as well. Hobson et al.8
report that technology use among people with
MND varies widely, concluding that physical
inaccessibility of certain functions and digital
illiteracy are among the most common
reported difficulties. They further note that the
dependence on technology is a real concern as
human care is gradually replaced by assistive
technologies. " It would be impossible to have
a one tech fits all in the case of MND because
of the inherent heterogeneity " and varied
expressions of progression of the disease, Yerbury
agrees. " Site of onset plays a major role
but so too does rate of progression. Two types
of technology can be consistently used, eyegaze
and neuronode. "
The role of manufacturers in the setup of the
hardware and training on the technology varies
greatly. Access to an occupational therapist also
remains crucial to the setup process. In terms of
learning how to use the hardware, Yerbury says,
" I have found that the assistive technology that I
have used is intuitive and normally takes me a
few minutes to master. " Although, he says, " this
is not the case for everyone. " Most of the electronic
hardware Dr. Yerbury uses requires overnight
charging, although his laptop and phone
can charge through his wheelchair battery during
the day. Yerbury reboots his computer regularly
to maintain optimal processing power. For
backup, " the most important pieces of equipment
have to be duplicated. Things like the equipment
that breathes for me is too important to not have
a backup. I also have two eyegaze setups for the
same reason. All of my work is stored on the
cloud so I don't rely on any PC with my data. "
The Surface Pro laptop used by Dr. Yerbury
has the maximum available capacity, but he says
additional processing power would benefit the
functionality of his systems.
Additionally, the technology Dr. Yerbury has
adopted occupies a significant amount of space
80
in his home. " Technology for myself takes up a
lot of space, " he says, " the living space in our
home has been drastically reduced. "
SOCIO-TECHNICAL ISSUES
There are many physical and social barriers
that people with MND face in their environment
on a daily basis. As more precise and cuttingedge
innovations continue to be developed, it
is essential to understand individual experiences
in order to address MND concerns. In terms
of advice to others dealing with MND, Yerbury
remarks, " There is no instruction manual or
advice that can make MND/ALS manageable.
Youreallyhavetotakeitday by day. " Hecontinues,
" One piece of advice would be to stay
ahead of the symptoms, don't wait until you
need assistive technology because by then it is
too late. "
There is also a great financial burden for
those diagnosed with MND, and research indicates
that there is inadequate government support
and funding.9 According to Dr. Yerbury,
this deficiency is a serious concern for people
with MND in Australia, as " the National Disability
Insurance Scheme is looking for value for
money so they balk at spending tens of thousands
of dollars on equipment if your prognosis
is poor. "
Yerbury also acknowledges that his position
where he is able to work with developers to
test the latest technologies is not the case for
many living with MND. The costs of MND in Australia
have been examined by Deloitte in 2015,
and were estimated to be around AUD 1.1M
annually per person.10 However, Yerbury says,
cost must not be a determining factor in supporting
people with MND. " As a society, " he
argues, " we need to decide if a basic quality of
life is a fundamental right and if so stop evaluating
whether someone's life is worth a dollar
amount. "
ACKNOWLEDGMENTS
Yerbury generously agreed to a primary
interview for this article on June 12, 2019. He
conveyed his responses on August 18, 2019, and
approved the piece for submission to the Magazine
on September 4, 2020.
IEEE Consumer Electronics Magazine
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