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A Day of a Person With Quadriplegia

Submitted by Tom on Fri, 07/02/2010 - 09:22
  • accessibility
  • disabilities
  • Quadriplegia
  • Technology

Tied up with an invisible chain -- you’d probably think this to yourself if you suddenly found out that you can’t walk, move, lift your arms, or even just curl your fingers.

This could easily be anyone’s reaction if they’ve had a spinal cord injury and is left paralyzed from the neck down. But this doesn’t have to be so. For the many people living with quadriplegia, life doesn’t have to slip away from them even if it had slipped away from their limbs.

This is exactly what our friend will show us as he invites us to a day in his life. We will see the daily challenges that he has to face and how assistive technology and adaptive tools are helping him to overcome them.

Meeting Our Friend
Jackson is a 68-year old retired elementary teacher. A tragic accident 12 years ago had injured his spinal cord, leaving his legs and body completely paralyzed. Jackson however has retained movement in his arms and shoulders. He can bend his elbows, but he can’t straighten it. His hands and fingers are permanently curled, though he can still flex and extend his wrists.

Jackson lives with his wife, Sue, in their old house which they have remodeled to accommodate Jackson’s condition. Jackson likes to keep himself updated with the news and he has never stopped educating people. He also loves to visit family and friends. Let’s see how Jackson does all of these things and many more as we follow him throughout his day.

Starting the Day
Jackson likes to start his day with a quick shower. His wife and an attendant help him get onto his wheelchair with a transfer board. Inside the bathroom, his attendant uses the same transfer board to help him get onto the toilet and into his shower chair. The bath is big enough to allow Jackson to be wheeled directly under the shower.

After taking a shower, Jackson is set back in his wheelchair and comfortably rolls to the bathroom sink to brush his teeth and shave himself. Their bathroom has been specially designed to accommodate his chair and there are fixtures that help him do most bathroom related tasks independently. The bathroom sink features a sensor faucet and there is enough space to hold his electric toothbrush, electric flosser, electric razor, and other toiletries.

Jackson wants to look especially nice today as he is meeting with an old football buddy later on that day, so he asks his wife to select a nice polo for him. His wife helps him into his clothes and he uses a button loop to help him button his shirt despite of his weak grasp.

Having Breakfast
Jackson rolls his wheelchair into the kitchen for breakfast. This time he is on an electric wheelchair, which he maneuvers by moving a joystick with his wrist. Jackson prefers an electric wheelchair because his arms are not strong enough to constantly propel himself on a manual wheelchair. An electric wheelchair also has controls that allow Jackson to adjust according to his preference the height of the chair, the height of its legs, and the chair’s slant.

Sue has prepared a plate of eggs and toast for Jackson. He uses a universal cuff to hold a fork. It is shaped like a cylinder and fits comfortably in Jackson’s curled hands. It features a pocket which holds a fork, spoon, or any slim utensil tightly, helping Jackson to have a firm “grip” on it.

Jackson sometimes takes a glass of orange juice with his breakfast, which he holds with his hands. Today, Jackson wants coffee with his breakfast. He uses a straw to sip the warm beverage because his hands are not steady enough to hold hot drinks.

Going to Work
Jackson keeps a blog to help educate other people of the challenges of quadriplegia and the available assistive technologies for this condition. He does this using his computer which is installed with a voice recognition system. This software allows Jackson to navigate the computer and perform a number of tasks by simply speaking into a microphone.

Jackson sometimes uses a special hand attachment to use the keyboard, such as for typing in his password. He uses a modified trackball instead of a mouse. He moves the cursor by rolling the ball with his right hand. He then clicks the mouse button by using A pressure switch on the left of the keyboard that replicates the mouse button.

Jackson likes to keep himself updated with news and current events. Since he has difficulty handling newspapers and magazines, Jackson uses the Internet to access them online.

Going Out
In the afternoon, Jackson prepares to meet up with his old football buddy in a downtown cafe, located about a mile from their house. The downtown area is near enough for Jackson to travel on his own in his power chair. Most public facilities, restaurants, and other business establishments in Jackson’s community are wheelchair-accessible. And there are always plenty of people ready to help Jackson to open the door, reach stuff on a shelf, or bring food to his table.

Before going out, Jackson calls the café to check his reservation. He uses a voice activated speakerphone that allows him absolute hands free usage. Names and telephone numbers have been previously programmed in the unit. All Jackson has to do is to give the voice command, “call café” to activate the dialer.

His reservation has been confirmed. In going out, Jackson carries with him a small bag containing his wallet and credit cards, a smaller purse with spending money, a couple of straws, several universal cuffs, and a cell phone for emergencies. His cell phone is also on voice command.

Jackson travels with a companion if he needs to go to other places much further than a mile from his house. Though still in his electric wheelchair, Jackson's companion makes sure that Jackson can cross major streets safely or help him maneuver his electric wheelchair around obstructions and uneven surfaces.

Downtown
Jackson and his old football buddy meet up at the café. They both had chicken enchilada served with fresh salad. Jackson had his enchilada served in bite size pieces to make it easier for him to pick it with a fork. He uses a universal cuff just as he would at home.

Before leaving downtown, Jackson stops by the drugstore to buy cough drops and hard candies that he loves so much. At the counter, Jackson hands the cashier his purse which contains some spending money and asks her to take whatever she needs.

Evening Activities
Jackson decides to watch a little television while he waits for Sue to finish preparing dinner. He wheels into the den and turns on the lights and television with a voice directed environment control unit. Jackson speaks onto a microphone mounted on his wheelchair and the voice is transmitted wirelessly to the base unit. It processes the command and in turn sends the signal to the appropriate device.

After dinner, Jackson does a little reading by a bedside table with a reading light attached to a magnifier on a flexible arm. He uses a simple page turning tool to help him turn the pages of his book.

By nine o’clock, Sue comes in to help him get ready for bed. He's quite excited about tomorrow. They’re going to take their minivan with an electronically operated ramp to be at his grandson’s 7th birthday.

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Thank you for putting things into context

Submitted by Alex (not verified) on Sun, 07/04/2010 - 22:16.

Hey Tom,

Thanks for a wonderfully inspirational post that really drew me into Jackson's world.
Makes me appreciate what I still have and puts into context all the 'problems' I am having in life.
-Alex

  • reply

Tom and Jackson, Thank you

Submitted by Madeleine Kolb (not verified) on Mon, 07/05/2010 - 10:00.

Tom and Jackson, Thank you for sharing this look at a day in Jakson's life. I'm struck with how the combination of technology and the human spirit help a person live as normal a life as possible. Kudos to you, Jackson and Sue, for doing so well.I hope that your grandson's birthday party was a joyous occasion for all. That little boy is lucky to have you two as grandparents.

  • reply

life of a quadriplegic

Submitted by Rick (not verified) on Thu, 07/08/2010 - 17:40.

Wow, almost sounds idyllic!! Let's get real!!

I am a c5 quadriplegic and I don't recall life being all this wonderful. Tom has missed some rather critical parts of "our" daily routine. To mention just a few, there is our loss of sexual function, bowel program, catheterization [and of course the bowel explosions and wet pants that occasionally go along with these and, more importantly, the never-absent worry that we might have an "accident" at any moment], sweats and chills resulting from our "broken thermostats, regular urinary tract infections, possible skin breakdowns, to mention just a few. Then we've got the external /environmental factors such as rain and snow, getting in and out of cars, flat wheelchair tires, dead wheelchair batteries, and oodles more. I've barely scratched the surface.

Even with all of these problems, after 32 years in my chair, I do manage to maintain a relatively happy and useful life. I'm happily married and manage a successful growing business. But to be perfectly honest, it ain't easy!

Please do not underestimate, or minimize,the difficulties and obstacles with which quadriplegics must deal every day of their lives. It's not the picnic that you paint in your view of Jackson's life and he, and we, deserve more credit.

  • reply

Jackson

Submitted by Tom on Wed, 07/14/2010 - 08:16.

Dear Madeleine,

Thank you for your kind words. I guess we created a real great person. In reality, as I don't want to single out any people, the people I introduce in these posts are imaginary. So that I can talk about all I want to without having to disclose anybody's personal life.

  • reply

@Rick

Submitted by Tom on Wed, 07/14/2010 - 08:20.

Dear Rick,

I totally agree with you. I would even go much further. There is a whole lot to talk about that a blog post would not be sufficient. Maybe not even a whole blog if we wanted to touch all issues. The reason why I have omitted much of it is because on this site we only deal with the accessibility of information technology. I do understand that other things are very important, too, but there are other places where people can read more if they wish. What I wanted to achieve with this post was to briefly introduce technologies to those who have never heard about it.
Usually I take a particular disability, create a test case, and put it into the context of a person's day. Then, I take the individual technologies and discuss them in greater detail. But we restrict this discussion to information technology only.

I hope it answers your question.

  • reply

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