In 2015 we were gifted by a visit from Steve Blow, a long time and wonderful journalist at the Dallas Morning News. We had contacted him about the possibility of an article bringing awareness for our Dallas golf tournament that year, and even tried to entice him by sending a copy of my first book, From 2 Wheels to 4. We didn’t really expect him to read it, much less contact us. He did however, and even came to our house to conduct an interview. In the ensuing article for the DMN, Steve wrote that he was amazed at what all I could do from bed. He remarked that I looked a little like a one-man band from the 70s.
In 1940, the average life expectancy after SCI was only 18 months, so the thought of making these individuals lives more fulfilling and productive didn’t even occur to most caregivers of that time. That began to change in the 1950s because of Dr. Howard Rusk, an early pioneer and driving force in the new field of rehabilitative medicine. His experience working with severely wounded and disabled servicemen during and after World War II, coupled with advances in antibiotics convinced him that better outcomes were possible. By the 1970s, average life expectancies had increased significantly, which was a mixed bag. If you were a high-level quad who spent most of your time in bed, your life consisted of short periods of contentment interwoven with large amounts of boredom. If you were lucky enough to have steady attendants, boredom could at least be tempered. These individuals could read stories, regularly change the channel on TV and tune into your favorite radio broadcasts. If you were not so lucky, hanging on to your mental sanity was more difficult. Today, the landscape for such an individual is dramatically different.
From healthcare to access, things are light years ahead of where they were not so long ago. On the other hand, the availability of family caregivers has declined with the preponderance of two-person working households. That is where technology has come in to help fill the void. In my case, technology awareness started while I was in rehab. There was an individual who visited me from the office of Assistive Technology. They told me about all the things that were available for high-level quadriplegics like me, who would be destined to spend the majority of the rest of their life in bed. This technology is as amazing as it is life-changing. In our case, it has enabled my wife to continue her employment from home, yet still be 100 feet away should I should need assistance. As for myself, this technology has allowed me to remain useful while not driving my wife completely crazy! In the not too distant future, I foresee robots that will be able to handle most non-healthcare related tasks. Beyond that, who knows? Maybe there will even be doctor and nurse robots whom you can give a name, just like those you give your smart phones today. Be careful what you wish for however, as that probably spells the end of unplanned napping!
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A. Sicare controller on left side of tray. This device allows me to turn on/off overhead lights and ceiling fan. It also allows me to turn on/off a television, change channels and control volume. Finally, it allows me to raise/lower the head of my bed, the foot of the bed and the bed itself.
B. Personal computer mounted on tray with camera. Through software called Dragon Professional Individual, I can fully interact with my computer via voice. I can write Word documents, create PowerPoints and Microsoft Publisher articles, develop Excel spreadsheets, write and answer emails, surf the web and more. The camera atop the computer reacts to a small round adhesive backed “dot” which is placed on the bridge of my glasses. This allows me to control the computers cursor in a heads up display fashion.
C. The black flexible tube you see on the right side of the picture is attached to bed support rails. The clear plastic tubing you see underneath the flex arm is connected to a hydration pack similar to the ones bicyclists use. (I know – ironic!) It allows me to stay hydrated 24/7 without having to burden someone to give me drinks all the time. This is important as quadriplegics are typically instructed to consume about 3 quarts of water per day. The gray tubing you see above the flex arm is connected to a sip/puff device on one end and a small transducer on the other. When the transducer is connected to my Bluetooth, I can control my voice-activated cell phone to make and receive calls. With the advent of the iPhone and other smart phones, communication has gotten even easier with improvements in voice-activated control. The small white plastic tube connected to the flex arm (like those found in your dentist office) is the sip/puff tube, but it also serves to relieve facial itches!
D. The headphone you see with the boom microphone on my left ear is connected to the computer. This allows you to not only interact with Dragon, but listen to streaming music! The headphone on my right ear (you can see the cord coming from it) connects my Bluetooth with the transducer, allowing operation of my phone. Devices such as Amazon Alexa streamlines this process even further.
Best Of series articles are those that showcase a product or place that is exceptional for those in the spinal cord community. Do you know of a product, or have you been to a place (restaurant, doctor’s office etc.) that has made your life much easier or better? Share it with us atinfo@northtexasusa.org
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