One of the frustrations often expressed by those whose lives are affected by ALS is that no progress
has been made in the fight against it. I believe that they are aware of the great progress made in
understanding the disease process, the biochemical processes at the cellular level, the genetic, genome,
and chromosomal tracking of the disease. I believe that what they are referring to is that all of this work
has not led to a treatment or cure, to anything that can make a real, practical, day to day difference in
our lives. Dedicated researchers have been kissing a lot of medicinal frogs but haven't found a Prince.
Rilutek rates as a "Sir" for it's effectiveness, or perhaps a "Lord" by virtue of
being the first drug with proven effectiveness, but sadly it is no Prince.
However, if advances "in" ALS aren't yet affecting our lives, advances "around"
ALS certainly do. I am referring to technological advances that have prolonged and improved the quality of
our lives. This technology isn't something that a person with a "falling off a cliff" kind of
progression has time to appreciate, but my progression has been a long slow tumble down a rocky slope. Over
my twenty nine years of living with ALS I have seen so many technological advances, each of which I use
every day and none of which I take for granted because I have seen life with ALS without them.
Even before I was diagnosed with ALS, I had decided that I would never want to live if living meant
being paralyzed and on a ventilator. I was an Intensive Care nurse and dealt daily with patients in that
situation. Trying to read the lips of those who couldn't speak, or worse, the eyes of those with facial
paralysis, knowing they were desperate to communicate basic needs was frustrating and heartbreaking. An
itch they couldn't scratch or an uncomfortable position they couldn't change would be bad enough, but what
if they were trying to tell me of a throbbing toothache, gall bladder attack, chest pain? Making their
lives physically comfortable was so difficult. Making them emotionally comfortable seemed impossible. Their
days were spent staring at the same four walls and a television whose channel they couldn't change. I
wondered how they could bear the endless hours. No jaunts down the hall much less a wheelchair ride
outside. Just getting them into a chair was an effort because they were tethered to a machine bigger than a
dishwasher. Being at home would certainly be an improvement but still I hoped that their brains could
somehow shut down imagination and desire, restlessness and boredom.
When I learned I faced all that because I had ALS, I was horrified. I knew I could refuse to be put on
a vent but would I be brave enough for that? Would I even be able to cope with the paralysis before the
vent was needed? I couldn't see how.
But that was in 1985. Today I am a vent dependent quadriplegic, and quite a happy person. The future I
thought I faced in 1985 is far different than the life I lead today! Even before I left ICU nursing in
1987, technology was making changes.
In the late 80's, there was talk of a new type of ventilator that delivered air through a tightly
fitted mask over the nose rather than a tube inserted through a hole in the throat. Little did I imagine
that first CPAP machine would acquire computer chips by the early 90's and become a BiPAP machine.
BiPAP didn't exist just 20 years ago and wasn't in common usage until about 10 years ago but today is
part of the Standard of Practice for ALS. That bit of technology kept me alive and breathing comfortably
for 6 years until a ventilator was needed.
Neither did I envision what that ventilator would be like. In 1985 ventilators were the size of a
dishwasher. By the late 80's they were the size of a large microwave. It was certainly not worthy of
the designation "portable", but it was a start. The vent of today is no longer the size of a
kitchen appliance. It is the size of a laptop computer and hangs on the back of a wheel chair, making it --
and me -- portable far beyond the four walls of 1985. I can take a jaunt around the yard or neighborhood, a
trek to the mall, or trip across the country.
Not all the technological advances have been in medical equipment. My day begins on my memory foam
mattress pad, an great comfort improvement over the "egg crate" foam of the past. I move to my
power wheelchair where I sit on a glorified whoopee cushion. The technology behind pressure relief cushions
has taken them to new levels of comfort and pressure sore prevention. I can spend a 16 hour day sitting up,
something impossible on a standard chair cushion. The power wheelchair itself, although not a new
invention, has benefited from technology and is now moved, tilted, reclined, raised, and adjusted with
computer technology that gives a greater level of independent operation that is continually being improved
In the bathroom I have another little gizmo that, although available for decades, has improved greatly
in 20 years. The electric toothbrush is now battery operated, rechargeable, and as of 1987, has a much more
effective rotary brushing direction. Not an earth shattering breakthrough but definitely one that kept me
dentally independent much longer and now makes my care easier. Although I don't have one, many people
with ALS use heated and padded toilet seats with spray bottom washers and warm air dryers!
Throughout the day I am surrounded by other little gadgets that make my life easier. In the 1990s, when
semiconductors for emitting and receiving infrared radiation were developed, remote controls gradually
switched to that technology and the proliferation of remotes began. Remote controls are not just for TVs
anymore! Stereo systems, VCRs, garage doors and car doors have all gone remote -- and the remote craze
hasn't ended there. Heaters, fans, gas fireplace logs, lights, window shades, doors -- nearly everything
can be put on a remote. Can't keep track of all the remotes? Get a single programmable remote and teach
it to do everything. Can't handle those tiny little remote buttons? Get a remote with over size
buttons. Can't handle buttons at all? Get a light pressure switch and scanning device.
Safety has improved as well. Cell phones make family members reachable wherever they go. Emergency call
buttons summon help if we have fallen and can't get up. Chairs with lift seats reduce the risk of
I end my day with a favorite invention that hit the market in the mid 80's. The simple invention of
CDs has been a daily joy for me. I love to read and when I could no longer turn book pages I began
listening to books on tape -- and dealing with hissing, snarling tapes and the headaches of rewind and fast
forward and buttons I couldn't push. CDs are a major improvement. Remote controlled multi disc players make
books and music accessible far longer than the tape deck of the 80's.
Gadgets like these simplify many things for the paralyzed, but for improvement in the quality of life
nothing tops the computer. I use it as a remote to control the TV, lights and anything else I can plug into
an X-10 outlet. I can use it to answer the phone, to speak words for me when my trach is cuffed and I
can't talk, to play my favorite music or movies. And all of this is done with glorious, delicious
Beyond being an environmental control unit, my computer saves me from my worst fear, the mind numbing
isolation and boredom, the need to shut down my brain to preserve my sanity. I am occupied, distracted,
entertained, informed, and even productive thanks to my computer. Aside from the time-passing simple
entertainment of computer games, I use my computer to maintain records for our neighborhood association,
retouch, restore, and print photos, design and print flyers and cards, t-shirts, family photo CDs. I
can't wield a paint brush or hammer but I have planned projects from simply rearranging rooms to
kitchen remodeling, deck design, and landscaping. Being able to see how something will look before
beginning has really helped overcome the hammer wielders resistance to doing things my way. Power in
Not only have computers come a long way from the basic functions of my Apple IIe of the early 80's,
handicapped access to computers has evolved as well. Today I use Click'n'Type, and Dasher, two
different type of onscreen keyboards, to type without using my keyboard. Point'n'Click pushes the
mouse buttons for me -- all for free. As my ability to move the mouse to move the cursor deteriorates, I
can go to a device that moves the cursor by following slight movements of my head. A step up from that are
devices that track eye movements to move the mouse. The very latest technology is a page right out of
science fiction. Computers can now be operated by thought! This technology is in very early development but
is already being used and holds promise for the future.
I had to stop working in 1995, coincidentally the same year that AOL gave access to the new and
developing World Wide Web. I had dabbled with the Internet previously but it wasn't until the Web
arrived that I found being online to be useful. In just a few years the Web exploded from a few websites to
a massive source of information, entertainment, communication and commerce. Today I read newspaper and
magazine articles (replacing the printed versions I can't manage), use the Internet as a giant
encyclopedia to research any topic, comparison shop and sometimes buy, select books on CD to be reserved or
renewed for me at my local library, keep in touch with family and friends via email, and keep informed
about ALS and communicate daily with others with ALS.
The greatest reward I get from my computer and the Internet is that it isn't a one way street. I
can give as well as receive. My involvement with ALS groups online lets me share my hard won knowledge of
ALS with others. I have been able to put up a personal website to relay my nursing information about ALS. I
get great personal satisfaction from this technological ability to help others, and have even made my first
venture into designing a commercial website. (The heck with personal satisfaction -- I could even make
money designing websites!)
Speaking of money, obviously all these tech gadgets aren't free. The medically necessary ones are
covered by insurance and Medicare, but the convenience ones are not. Just as when grocery shopping, I
compare prices, wait for sales, look for used equipment locally and on Ebay. Having had 20 years to
accumulate my ”toys" -- and upgrade them! -- has certainly been a perk not many with ALS have,
but I have learned that the expense is far outweighed by the quality of life these things give me and the
help they give my caregivers.
There isn’t a day that goes by that I don't use several things that were not available when I
was diagnosed with ALS in 1985, and not a day that I don't think how lucky I am to have ALS today
instead of before technology contributed to these advances "around" ALS.