BLOG – Breaking the Bad News

It's not what you say, it's what they hear.

Nobody likes to deliver bad news, including doctors. When the diagnosis is paralysis, there has been a long history of keeping patients in the dark for fear that knowing the facts will cause patients to give up hope for a fulfilling life. Current medical ethics dictatescreen-shot-2017-02-13-at-1-59-29-pm that patients and families be told the truth. Today, the questions focus on how and when to deliver the bad news–and on how much patients really hear and understand.

Thea Flaum, founder of FacingDisability.com has conducted on-camera interviews of almost 100 people with spinal cord injuries and members of their families. And when she asked people,” How did you develop an understanding of the injury?” she discovered – regardless of how and when the prognosis was delivered – people only “got” the news when they were ready to hear it. “What’s more,” Flaum says, “ no matter how wrenching, how anguished, how great their resistance to hearing the news – no matter how clumsily or carelessly the bad news was delivered – it did not seem to affect how they coped with their injuries or the way they lead their post-injury lives.”

screen-shot-2017-02-13-at-2-30-01-pmMarie, who was injured in 1998 at the age of 22, and has quadriplegia said, “Denial is a great thing. I knew in the back of my head what I was dealing with, but there was also that hopeful piece. Maybe the injury isn’t quite as permanent as they’re saying. But that came gradually. I was being practical and planning, and trudging forward, and doing my therapy, but not completely losing hope that I would regain some movement.” Today, Marie coordinates the SCI mentoring program at a major rehabilitation hospital. Continue reading

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BLOG – Women Make up 20 Percent of The SCI Community

Psychologists say females have separate needs

Amid all the social concerns about women, it’s important to remember about the equal treatment for women with a spinal cord injury (SCI). That’s because 20 percent of all injuries resulting in spinal cord injury happen to women. And since that number is so much lower than men’s injuries, ladies treatment often gets lumped into similar treatments men receive.

But treating men the same as women isn’t always practical. Though many of the physiological and medical needs are similar, females have specific needs for paralysis separate from those of males.

Heather Taylor, PHD, Psychologist & Director of Spinal Cord Injury and Disability Research, TIRR

Heather Taylor, PhD

Heather Taylor, PhD

Memorial Hermann Rehabilitation Hospital in Houston, TX says though reproductive needs may seem the most obvious and even most pressing, women with paralysis are unique. “It’s important that women recognize their individuality; they are different,” Taylor says. You can see Taylor talking about women with spinal cord injury by clicking here. “what-about-women?” Continue reading

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Quiz Answer – It’s an Adaptive Computer Keyboard!

Keyless keyboard makes typing easier

The OrbiTouch Keyless Keyboard is an adapted computer keyboard and mouse that requires no finger or wrist motion to operate. Two dome shaped controllers provide all 128 screen-shot-2017-01-24-at-12-30-39-pmkeys and mouse functions.

It’s been designed for anyone who has hand or finger issues that keep them from using a regular keyboard and mouse, or for those who want to type more comfortably. Two accessible domes replace keys to minimize hand and wrist exertion, creating a pain-free typing experience.

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Video instructions for the Orbitouch

This American-made computer keyboard alternative has helped individuals with disabilities or injuries become more productive, connected, and most of all, independent. The powerful communication tool is simple to learn and easy to use. An ergonomic keyboard and mouse in one, it is an alternative to the QWERTY keyboard. It requires no software installation and comes with everything needed to begin typing quickly. The keyboard helps individuals with hand, finger injury, carpal tunnel syndrome, cerebral palsy, multiple sclerosis, traumatic brain injury, spinal cord injury, arthritis, and autism.

The simple sliding and navigating of the two domes produces/types the desired character. Once the user’s hand, arm, or prosthetic device is placed on the domes, all typing and mouse movements can be executed without ever removing them. It can even allow the user to type while wearing boxing gloves!

You can find one for sale here.

For more about assistive technology listen to one of our therapists talk about adapting a screen-shot-2017-01-24-at-1-36-43-pmcomputer for someone with a high-level spinal cord injury.

 

 

 

Do you know anyone that uses a keyless keyboard? How do they like it? Leave a comment below!

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Quiz Answer – it’s an adaptive dog leash!

Originally used for a bike - clever leash adapts to a wheelchair as well

screen-shot-2016-12-29-at-3-55-27-pmThe bike tow leash began as a bike leash for running and exercising a dog safely. The popular leash quickly found its way to being used on wheelchairs also. The stiff yet flexible design keeps the leash from getting tangled — and the dog from getting too close or in front of the individual. The leash keeps both the rider and the dog safe. It makes an outing with a dog pleasurable, hands-free and fun! Continue reading

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Answer – It’s an adaptive shampoo tray!

Water and soap drain away while sitting up

There’s nothing like clean hair to help someone feel refreshed.

screen-shot-2016-12-15-at-9-56-13-amThis shampoo tray aid is designed to remain and fit comfortably while allowing the individual to have their hair shampooed when sitting upright in any chair. The device has the ability to conform over and around any chair and should be placed between the back of the individual’s head and the shampoo sink behind them. It allows the individual to remain upright in a comfortable seated position — and is helpful to the hairdresser or caregiver because it can reduce the risk of back strain. Continue reading

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Quiz Answer – It’s an adaptive toilet transfer board

The Personal-Aide Wheelchair to Toilet Transfer Board is made for tight spaces in just the right places.

Transfer boards are used to aid mobility when the feet and legs are fully or partially impaired. This one was made especially with the toilet in mind. The board has curved notches that will securely hug certain areas of a locked-down wheelchair and can gently screen-shot-2016-11-30-at-3-27-09-pmhook to the curves of a toilet seat.

This model has a shorter chair-end, which may make transfers easier for some users with certain types of mobility issues.

These transfer boards have been designed in cooperation with clinicians to optimize the strength-to-weight capacity and have been shaped for specific tasks. All boards are made as thin and light as possible using durable, multi-ply Baltic Birch finished with a non-marring, Continue reading

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Quiz Answer – It’s a Dressing Aid!

Bra Angel assists wth putting on a bra

screen-shot-2016-11-17-at-1-08-40-pm The “Bra Angel” was designed by an occupational therapist to aid women who find it difficult to bring both ends of a brassiere together when dressing. It’s especially helpful if hand weakness is an issue. That’s because the clasping mechanism can be further adapted to assist making bra closure and application simpler and easier.

The clever tool can be used with most brassiere type as the telescopic action adjusts easily for size. screen-shot-2016-11-17-at-1-08-28-pm

 

 

 

 

 

 

 

 

 

 

 

The “Bra Angel” is durable, latex free and lightweight.

One size fits all. You can see one online here.

You can see and hear a lot more about getting dressed with a spinal cord injury by looking here. screen-shot-2016-11-17-at-1-15-31-pm

 

 

 

 

Thank you for playing – please leave your comments below. We’d love to hear from you!

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BLOG – Expecting The Unexpected after

Spinal Cord Injury

FacingDisability.com has nearly 2,000 videos of family members answering real-life questions about how they cope with a spinal cord injury.

1-smallestOne of the more unexpected findings we discovered during the hundreds of interviews we videotaped over the years, was that the life changes caused by the injury could ultimately be quite positive. Here’s what we found:

 

 

 

The achievements after their injury were often greater than if they were never hurt at all

screen-shot-2016-11-09-at-3-56-11-pmPatricio, injured at age 24 – “I was either going to jail (before injury) or six feet under.”

 

screen-shot-2016-11-09-at-3-56-26-pmMichelle, injured at age 21 – “I found a new career!”

 

Ginger, injured at age 44 “I was forced to examine my values and screen-shot-2016-11-09-at-3-55-26-pmpriorities.”

 

 

screen-shot-2016-11-09-at-3-56-45-pm Tony, injured at age 27 “I became a father.”

 

 

For parents – it’s just another beginning

screen-shot-2016-11-09-at-3-58-17-pm Clarissa; son injured at age 19  – “I became interested in disabilities rights.”

 

Mary; daughter injured at age 22 “…gradually letting go of that and screen-shot-2016-11-09-at-3-58-01-pmjust experiencing your new life was the best part.”

 

 

screen-shot-2016-11-09-at-3-58-09-pmCarol Ann; son injured at age 20 “him going to Harvard Business School; that’s been such an experience for the whole family.”

 

 

For siblings – spinal cord injury can add jealousy, anger ad guilt — but not forever.

screen-shot-2016-11-09-at-4-00-39-pmJavier; sister injured at age 7 “Growing up, there was more attention coming to her. And when I was younger, I was kind of mad about it. But now…I mean, it happened, and obviously, she’s going to need more attention, more help, and my parents need my help.

 

screen-shot-2016-11-09-at-4-00-58-pmEunice; sister injured at age 7 “I was the oldest one, I was already 14 and I was about to turn 15. I didn’t understand the gravity of it all until several months passed.”

 

screen-shot-2016-11-09-at-4-01-04-pmJennifer; brother injured at age 23 “I felt many times that I wish I had done something that night that would have changed the course of his evening. It was the week before Christmas — maybe if I had just called to ask about what some of his holiday plans were, maybe it would have offset the night five minutes or so; that would have changed it.”

 

And for children with a parent facing a new or established injury…

screen-shot-2016-11-09-at-4-16-05-pmElizabeth; father became paraplegic before she was born “My dad being the way he is has given me a direction in my life because I’ve always participated in and been curious to learn about the wheelchair, to ask about the disability.”

 

screen-shot-2016-11-09-at-4-15-50-pmJennifer; mother injured when she was 14 “I understood it on one level, but it was also very frustrating, I sort of felt like I have all these questions, and I’m a teenager, and I don’t understand, I don’t understand why it’s not about me. It was hard.”

 

screen-shot-2016-11-09-at-4-15-58-pmSean; mother injured he was in his 20’s “I think a lot of the unknown…I’d never known anyone close, that had that sort of condition.”

Keeping an open mind and keeping up with therapies associated with spinal cord injury can make a huge difference in quality-of-life down the road. Many individuals are happy and living fulfilled lives with all levels of injury.

How has your life or the life of a loved-one changed as a result of paralysis? Feel free to leave your comments and insights.

 

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Quiz Answer – It’s an adaptive knife!

A kitchen tool with added grip
screen-shot-2016-11-03-at-11-25-26-amReaching for this handy adaptive knife is simple because it has an easy-grip rubber semi-circular handle. It can be adapted even further for someone with hand and arm weakness. It comes with a matching cover to conceal the blade and to protect hands and fingers when not in use. It’s great for several kitchen slicing needs especially for chopping herbs, chocolate, and dried fruit and even to cut a pizza.
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Quiz Answer – It’s an adaptive finger-loop

For holding your phone
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Ungrip – in use

This clever loop, called Ungrip, helps solve the problem of securely holding the increasingly bigger and slimmer smartphones on the market. Even with hand and arm weakness, keeping the phone close at all times becomes quick and simple.

  • EXTREMELY COMFORTABLE: Unlike metal or plastic rings, the fabric is comfortable for the fingers.
  • HIGHLY FLEXIBLE: Ungrip‘s design allows you to hold the phone in dozens of ways!

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