FacingDisability Presents Survey Results

At Meeting of American Spinal Injury Association

2014-04-23_2“The Changing Face of Spinal Cord Injury Education and Support in an Online World” will be presented by FacingDisability at the 2014 Conference of the American Spinal Injury Association in San Antonio, TX, on May 14.

FacingDisability.com is presented as a high-tech, low-cost intervention that expands the delivery of state-of-the-art healthcare via support and education online. The presentation highlights results from a recent online survey of website users. Here is a sample of survey questions and answers.

What sentence describes you best?
I am a person with SCI: 48%
I am a family member of a person with SCI: 19%
I am a heathcare professional: 16%

How old are you?
51 and up: 36%
35-50: 30%
25-34: 22%

How easy was it to navigate our website?
Extremely Easy: 26%
Very Easy: 46%

How helpful were videos by spinal cord injury experts?
Extremely helpful or Very Helpful: 71%

What were the most helpful expert topics?
Spinal Cord Injury 101
Sex and Fertility
Adjusting to Social Life in a Wheelchair
Basics of SCI Rehabilitation

How helpful were personal experience videosL
Extremely Helpful or Very Helpful:70%

What were the most helpful personal experience topics?
Life After SCI
Relationships After SCIsisit
Feelings After SCI
SCI Rehabilitation

How would you rate the overall effectiveness of the website?
Extremely Effective: 28%
Very Effective: 36%
Moderately Effective: 27%

How likely are you to recommend the website to a friend or co-worker?
Extremely Likely: 40%
Very Likely: 31%
Moderately Likely: 15%

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Rehabilitation Institute of Chicago

Builds Innovative New Hospital

ChicagoRICTowerThe Rehabilitation Institute of Chicago (RIC) has broken ground for a new state-of-the-art medical facility a few blocks away from its current building. Projected to open in 2016, the 1.2 million-square-foot, 242-bed hospital will be three times larger than the existing hospital it will replace.

The new hospital will have five centers specializing in brain, spinal cord, nervous system, cancer and pediatric rehabilitation. Each center will feature an “Ability Lab,” a new method of care that integrates research and treatment. It is a radical new concept in which in physicians, scientists, engineers, therapists and innovators of many kinds will work side-by-side around a patient in a space specificially designed to spark innovation.

The Ability Labs’ model of integrated care will allow patients to benefit from research results sooner. “Breakthrough research that used to take 10 years from lab to scientific journal to hospital may now be introduced to our patients right away,” said Dr. Joanne Smith, RIC President and CEO. “We will see enormous acceleration in our ability to understand and to solve patients’ problems.”

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Weight Management after Spinal Cord Injury

Participate in an online survey

scale 4Most people with spinal cord injuries find it hard to keep their weight under control. In an effort to understand the issues, graduate students in the Master of Occupational Therapy program at Cleveland State University have created a study focused on weight management and physical activity SCI.

The study includes an online survey developed to assess the daily habits and perspectives of people after spinal cord injury. It asks questions related to diet and exercise, along with the physical and emotional factors that influence them. It is designed to determine if such considerations as transportation, accessibility, affordability or embarrassment are preventing healthy life styles. Results of the study will be used to develop effective weight management programs for individuals with SCI.

If you have a spinal cord injury, you can participate in this survey by following this link: http://kwiksurveys.com/s.asp?sid=jhn34e6t8cokicn227735. The survey is anonymous, and is accessible on any computer or mobile device with an Internet connection.

Weight management after spinal cord injury is an issue that needs attention. If you know someone who would be interested in participating in the study, please pass on the link. If you have any questions, please contact: csuscifitnesssurvey@gmail.com.

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Remembering Jeff Shannon

Memorial Photo Montage

Jeff Shannon, whose true, honest and beautifully written posts for the “From Where I’m Sitting…” Blog have been featured on FacingDisability.com, died on December 20, 2013 at Stevens-Swedish hospital in Edmonds, Washington. Here is a photo montage from Jeff’s memorial service.

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“Challenging Reality” with Pictures

New Ideas for Quads
Winter Photo: Jay Scott

Photo: Jay Scott

An innovative new blog, “Changing Reality,” is a collection of artistically photographed barriers like the major snow scene at left, along with information and ideas about how quadriplegics can overcome those barriers.

The website focuses on challenges and solutions relevant to people with quadriplegia.  The primary contributor and creator, Jay Scott, is quadriplegic himself, and a talented writer and photographer, who lives in Canada.

Scott looks for technological and creative solutions to quad problems: new push rims, door openers, better gloves, bag clips, arm garters, can openers, kitchen knives, etc. Jay writes about how his discoveries have made his life easier and better.  He is an honest voice of experience.

Push Rim Photo: Jay Scott

Push Rims photo: Jay Scott

Scott says, “for every push of the wheels with paralyzed hands, coated hand rims make all the difference. Losing your grip part way through a push wastes energy, can cause a loss of balance and, if it happens on a slope, can make you need to stop, straighten out, and restart your climb.”

Photo: Jay Scott

The Gloves photo: Jay Scott

Scott says, “These rubber-palmed, leather, quad wheelchair gloves (quad because of their lack of fingers and wrap-around style) provide protection from the disproportionate amount of use hands go through on a daily basis. They are, for me, shoes, brakes, warmth, a means to hold on to tools and utensils, a source of rigidity for my fingers, friction for countless applications and an item that spends more time on my body than off of it. This well-used pair is very near retirement.”

Scott’s focus is on “ growing the content that I, as a tetraplegic, know best, with the help of others who wish to share the things that cause them to struggle, and the technology that they use to make their lives easier.”  He welcomes responses, suggestions and feedback. Email: challengingreal@gmail.com Check out the blog: http://challenging-reality.blogspot.ca/

 

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Remembering Jeff Shannon 1961-2013

FB profile (3)Jeff Shannon, whose true, honest and beautifully written posts for the “From Where I’m Sitting…” Blog have been featured on FacingDisability.com, died on December 20 at Stevens-Swedish hospital in Edmonds, Washington.

We have been proud to have Jeff’s distinctive voice as a feature of our website. Only 10 days ago, we were emailing about his next post: He was planning a humorous piece about the problems of being dressed by others. He was going to call it “Looking Good.”

From my perspective, Jeff always found a way to “look good,” no matter what life handed him. A C-5/6 quad who was injured in 1979, two weeks after graduating from high school, Jeff was planning an acting career before he was injured. (“I was intending to become George Clooney,” he once told me.) Instead, he came up with what he would later call a “Plan B.” He studied film history, theory and criticism at Wright State University in Dayton, Ohio.

Continuing to find another path, Jeff returned to his hometown of Seattle after college and became a film reviewer and entertainment reporter for the Seattle Post-Intelligence from 1985-92. After that, he continued to write freelance film reviews for the Seattle Times. Jeff then became the assistant editor of Microsoft’s “Cinemania,” CD-ROM and website movie encyclopedia from 1992-1998, and was the original DVD section editor in the Home Video department of Amazon.com from 1998-2001.

It was natural for Jeff to write on disability subjects in the movies and in life for both RogerEbert.com and New Mobility magazine. He wrote with sincerity, power, and the authority of his personal experience. Over time, Jeff became a disability advocate, serving two three-year terms on the Washington State Governor’s Committee on Disability Issues and Employment, from 2005-2011.

He was not afraid to take on important and provocative issues. He once wrote: “To be disabled in America, in 2011, is to realize that you may have gained your civil rights, but most of society didn’t get the memo.”

We will miss Jeff Shannon’s voice and unquenchable and valiant spirit.

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Giving Thanks on the 2-for-1 Plan

Jeff Shannon: FROM WHERE I'M SITTING...

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For anyone with a serious disability, it’s only natural to treat Thanksgiving more as day of reflection than celebration. There’s always room for both, but ever since I was injured in 1979, I’ve always felt what I considered to be a completely natural degree of ambivalence toward the holiday. Especially in my first years post-injury, the name itself seemed like a cruel provocation: Thanksgiving? Giving thanks for what, exactly? For this young but broken body, and the wheelchair it needs to haul itself around? Truth be told, I rarely felt that bitter or self-pitying about my injury or the holidays in general, but Thanksgiving, by its very nature, has always been accompanied by a melancholy sense of irony.

I know some people who are genuinely thankful for their disability and the way it changed their lives, in many respects, for the better. In some deep part of my soul I can understand that; I’m certainly grateful for the kind of deep-rooted wisdom that comes when you achieve peaceful coexistence with paralysis (or as peaceful as it can get, anyway). And when I refer to a “melancholy sense of irony” with regard to paralysis and Thanksgiving, that prevailing mood should not be misconstrued as negative. For me, a bit of melancholy over the holidays has always been useful for putting things into a genuinely thankful perspective. To appreciate the highs, you have to maintain a realistic acceptance of the lows.

The 2-for-1 Trade-Off

Even with a healthy sense of perspective, however, I doubt I’ll ever rank myself among those who truly feel thankful for their disability; my brain just isn’t wired to be quite that accepting. Instead, I developed a basic psychological strategy that may seem utterly simplistic, but it’s been working well for me for three decades’ worth of Thanksgivings now, so it must have some merit.

It’s a simple game of 2-for-1 involving life’s pros and cons: For every single thing you can’t be thankful for, you have to come up with two things – any two things – that you genuinely feel thankful for. And if you can’t maintain a constant rate of 2-for-1, you simply aren’t trying hard enough. (Yes, I know, this sounds a bit childish, and in some respects it is, but as a psychological pastime it’s a bona fide spirit-booster.) Here’s an example: Why would I ever feel thankful for the neuropathic pain that makes nearly every day of my life less enjoyable than it could be? On the other hand, (1) I’m grateful that I’ve found the right balance of pain medication to keep me reasonably functional and (2) I have a good health insurance plan that covers the cost of those meds.

And whoever said that all of these 2-for-1 trade-offs must always relate to our disability? There’s no rule against mixing it up like this: I can’t be thankful for that pressure sore on my foot that’s taking forever to heal, but (1) I’m thankful for all those pleasant encounters with the attractive nurse at the wound-care clinic and (2) I’m thankful that “Breaking Bad” ended with such memorable intensity. See how that works? Anything goes as long as it’s at least 2-for-1. It’s a mix-and-match game of gratitude for the year that’s nearly ended. All “pros” are allowed, even at random, and all “cons” must be subject to scrutiny and placed in proper perspective.

Expand Your “Gratitude Criteria”

When things aren’t going well – and 2013 was, for me, a very difficult year – placing thanks can and should transcend the personal. Even when it seems like things are looking bleak in your own life, there’s no reason you can’t counteract those desolate emotions by giving thanks for things beyond your own personal needs and desires.

So while this year may have been personally challenging, I’ve been thankful not only for surviving those challenges, but also for such simple pleasures as (1) watching spiders construct their intricate webs during an unusually warm Indian summer; (2) witnessing the Seattle Seahawks’ best season ever (and I’m not even a huge football fan); (3) marveling at the technical achievements on display in the hit movie “Gravity”; and (4) enjoying Paul McCartney’s latest album “New” as I write this column. (The list goes on, and speaking of which: Writing this blog for the Facing Disability website tops my list of things to be thankful for in 2013. It’s an honor and a privilege to have such a personal avenue of expression related to spinal cord injury.)

And while the game might be 2-for-1 at its simplest, there’s nothing stopping you from adding more pros against the cons (hence my examples of 3 and 4 above), especially when your circumstances are unusually challenging. You could boil this all down to “it’s the little things that matter,” and there’s a reason that cliché has endured: It has the unmistakable ring of truth about it, just like “the best things in life are free.” When we expand our “gratitude criteria” to include the entirety of our existence, there’s never any shortage of things to be thankful for.

Who was Jeff Shannon?

What are your thoughts on Thanksgiving? Please share below.

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From Manual to Motorized: When It’s Time to Change Wheelchairs

Jeff Shannon: FROM WHERE I'M SITTING...

FB profile (3)About two weeks ago, I was watching TV from my Invacare TDX powered wheelchair when, without warning, the chair refused to move. The joystick went dead, and the status screen on the control box indicated “Right Motor Fault” and “Right Brake Fault,” and I had no idea how to fix it. I knew there was a reset switch on the right side of the chair, but as I felt around with my semi-numb fingers, I couldn’t find it. So there I was, immobilized, and my cell phone was just a few inches beyond my reach.

I tried turning the chair’s power off and on, hoping that would restore the motor and brake function. It didn’t. I sat for a few minutes, hoping the chair would “self-recover.” It didn’t. Fortunately I had one more option: I was wearing my Life Alert badge on a string necklace; my health insurance plan had provided it for emergencies like this, and after a few more frustrating minutes I pressed the button. In less than a minute, I was talking to an operator via the Life Alert receiver, which was sitting on a shelf about 12 feet away. Several minutes later, an EMT team arrived.

The EMTs found the reset switch, and at first it looked like the problem was solved. Then the chair went dead again. We tried the reset switch several more times, to no avail. Suddenly the chair starting working again, as if nothing had happened. Slightly embarrassed, I thanked the EMTs and they left.

Prepare for Every Contingency

But what if I hadn’t had my Life Alert badge? What if I had been outside in the cold, rainy weather, or driving my minivan out in the middle of nowhere? When I was sitting there, worried about whether the chair was going to work or not, the obvious thought popped into my head: This would never happen with a manual chair.

Chances are, if your SCI is C-5 or higher, you may not have the option of using a manual chair, except perhaps for vacations and special occasions. The higher your injury level is, the more mechanically sophisticated your powered chair is likely to be, and occasional breakdowns are virtually guaranteed. Any mechanical and/or electronic device that operates on electricity will eventually malfunction.

For those who have a choice, the lesson here is obvious: Use a manual wheelchair as much as you possibly can. Pushing them promotes strength, endurance, self-confidence and overall health, both mental and physical. Manual chairs are far more convenient than powered chairs, especially if you travel. They, too, can malfunction, but it’s highly unlikely that you’ll ever be frozen in your tracks.

In early 1980, when I was released from the hospital after seven highly beneficial months of rehab, I was sent home with two wheelchairs: A standard-issue Everest & Jennings stainless steel manual chair, and a standard-issue E&J motorized chair. (Unlike the stealthy, almost silent six-wheelers of today, the old E&J’s sounded, at best, like the small motor of a rock-polishing machine. At worst, they sounded like belt-driven coffee grinders.)

To me the choice was obvious: I was an 18-year-old quad, vainly wanting to look as able-bodied as possible. I had enough arm and shoulder function to push a manual chair efficiently, so the E&J powered chair sat neglected in our garage. A couple years later, my parents and I agreed to sell it, and I proceeded to use manual chairs for the next 30 years. I’ve never regretted that decision, but in the 20/20 vision of hindsight, I would’ve kept the powered chair and used it for specific occasions when hills and rough terrain would’ve made manual pushing problematic.

It’s that simple: If you’re a quad who can push a manual chair, decide for yourself when it’s smarter to use a powered chair. Keep your options open, and don’t be swayed by your vanity. We all want to look as good as possible, but you should also swallow your pride and enjoy the liberating ease of a powered chair.

In 2009, when physical setbacks, aging and other issues led me to transition to a powered chair, I immediately realized that my stubborn pride had prevented me from enjoying the obvious benefits of motorized mobility. If you enjoy going fast as much as I do, using a powered chair is a no-brainer. The problem of hills and long distances immediately disappeared. Simply put, the benefits of a powered chair far outweigh the drawbacks – even those occasional, inevitable breakdowns that cause so much convenience and potential danger.

Knowing When to Switch

When the time comes to switch, don’t expect it to be easy – at least, not at first. Unless you’re extremely careful, it is virtually guaranteed that you will damage walls, kitchen cabinets and furniture as you grow accustomed to powered mobility. For a while at least, you’re going to be a bull in a china shop. If you own cats or small dogs, beware: You’ll probably run over their tails a few times if you (or they) are not paying attention.

Psychologically, of course, there’s a trade-off, especially if you have any body-image issues about your appearance. I’m keenly aware that I look “more disabled” when using my Invacare TDX, but what surprised me, as I began using it, was how little that mattered compared to the benefits of increased mobility. I’ll never regret using a manual for 30 years; I stayed fit and remarkably healthy during all that time. I never felt limited, but in many respects I was. Using the TDX, I enjoy far more mobility than was ever possible in the manual.

There’s one big exception, however: My TDX chair and I weigh 515 pounds combined, and that prevents being lifted up stairs. Now the homes of my friends are almost 100% inaccessible unless they have a ramp or level entry. That has increased my sense of social isolation, but that can be alleviated by meeting friends in restaurants or inviting them over. In the next few months I’ll be striking a comfortable balance, using my manual chair whenever it’s practical to do so, and my TDX most of the time.

It took me 30 years to come to my senses, but I’m glad I finally did. If you’re a quad who uses a manual chair exclusively, consider the alternatives. It’s never just one or the other. Have fun with both.

Who was Jeff Shannon?

Please leave a comment about your own story below.

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Breathing Pacemakers

Instead of a ventilator…

Ventilators often have to be used by people with high-level spinal cord injuries (C1-C3). Portable mechanical ventilators, which attach to wheelchairs, are often clumsy, and make it hard to move around freely.

But there are other options. Breathing pacemakers, which stimulate the diaphragm to contract and the patient to breathe naturally, are being used with greater frequency by people who were formerly vent-dependent. A system made by Avery Biomedical Devices, which is fully FDA-approved, works by stimulating the phrenic nerves, which cause the diaphragm to contract and the patient to draw in air, as in natural breathing.

Mechanical ventilators pump air into the body; a breathing pacemaker prompts the body to take a breath. Breathing pacemakers require intact phrenic nerves, which is why they are most commonly used with higher-level injuries (C1-C3). However, for patients with damaged phrenic nerves, it is often possible to repair the nerves through a graft and then begin using a breathing pacemaker.  The system has internal and external components. Small internal components are surgically implanted; the external simulator is the size of the VHS tape.

In addition to improving mobility, breathing pacemakers have an impact on quality of life. On average, people with pacemakers have fewer health issues and longer life spans. nerve grafts are an option for people who can’t otherwise pace due to damaged phrenic nerves.

This video tells the story of a child patient in St. Louis who received a breathing pacemaker.

Do you have experience with a ventilator? Please share your stories below.

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Adventures In Caregiving (Pt. 2): Parents on Call

Jeff Shannon: FROM WHERE I'M SITTING...

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I’ll never forget the last time my father helped me. It was a typical situation, repeated dozens if not hundreds of times over the previous three decades: Something would go wrong in the afternoon or evening, and my mornings-only caregiver would be unavailable to return for off-hours assistance. Most of the time, my dad would be available, sometimes reluctantly, but available nonetheless. He was not the kind of guy who could easily say “no” to his children — especially to his youngest son who’d been paralyzed at the age of 17.

That last time was no different, with one major exception: At the time, shortly before Thanksgiving of 2010, neither dad nor anyone else was aware that he was dying. We knew he was ailing, but the extent of his illness was unknown, even by his doctors. Pancreatic cancer was a prime suspect, but a firm diagnosis remained stubbornly elusive. Dad felt tired, and was suffering from mild abdominal pain, but he was the kind of guy who’d remain stoical about how he was feeling. He didn’t want to worry anyone, so there he was, late on a dark, blustery November afternoon, arriving at my house as he had countless times before, responding to my call for help. (More often than not, this involved a quick clean-up and change of pants; you can guess the rest.)

This time something was obviously wrong. Dad was clearly lacking energy, and pain was draining what little vitality remained. As he was getting me dressed and helping me get transferred back into my wheelchair, I watched him struggle and, for the first time in over 30 years, he needed a few breaks to rest.

Was I “Taking Advantage”?

As he rested, I was struck by a tidal wave of guilt and shame. I’d felt that way before, less severely, when I’d relied too heavily on my dad’s good-natured availability. Despite his weakened condition I had placed my needs above his, and as dad sat on my bed, tired and quietly frustrated, all I could think was that I was a lousy and selfish son who had exploited my father’s devotion for decades. I had never taken his kindness for granted, but for a variety of reasons I had allowed myself to expect and depend on it.

Less than two months later, on January 18th, 2011, upper bowel cancer claimed my father at the age of 79. I was with him (and my older brother) when he died, reassuring him that I’d be OK and had made appropriate plans to have my caregiving needs met – plans, I daresay, that I should have made many years earlier, but, well…as the saying goes, it’s complicated.

Jerry  Jeff @ Family Reunion 8-1-09 (3)It’s no exaggeration to say that my dad was my most reliable caregiver, not because he worked as many hours as my privately hired caregivers, but because he was almost always available, no questions asked. Even when he wasn’t, he would often leave a social engagement early on my behalf, or would delay plans so he could help me on short notice. For all of this and much, much more, I can unequivocally say that my father, Gerald Arthur Shannon, Jr. (1931-2011), was my hero. He had faults and foibles like anyone else, but it didn’t matter. My dad “Jerry” was my hero.

Compared to privately-hired caregivers who are not always available, relying on parents for back-up caregiving is an easy, default alternative. My dad may have grumbled a few times when I’d interrupt his day (or even his dinner) to ask for a favor, but for the most part he wanted to be available for me. He volunteered for the job. Likewise, I preferred him because, well, he was my dad and we had a solid, mutually supportive relationship. In return for his reliable backup, I would make myself available whenever I could return the favor. More often than not, this involved helping him with a computer or software problem. I’d had a similar arrangement with my mother before she died in 1988: She’d been a reliable back-up, too. Helping me was something she wanted to do, and I would reciprocate any way that I could.

First, Seek Other Alternatives

It was a workable situation, but the prevailing wisdom (among families and rehab counselors) is that parental or family-member backup should, if possible, be avoided.  If your SCI situation allows it, family members should remain just that: parents and siblings who are not your caregivers. For many, however, financial need and family dynamics turn at least one, and sometimes all family members into well-trained caregivers, even if it’s just during travel and special occasions.

There are, of course, other alternatives. Your first step should always be to connect with a DSHS social worker (if you financially qualify for their services) or contact all home-healthcare agencies in your area to see what help they can provide. It’s a lot like job-searching, except you’re the employer, looking for the best hires you can find. If you can take the time to network with home-care referral services, you can build a broad base of caregiver contacts (using want ads, etc.), as a way to avoid family-member back-up.

My current circumstances allow for reliable, agency-provided caregivers, and that’s been a blessing.

Depending on my father drew us closer over the years – closer, I think, than we would’ve been had my injury never occurred. Still, “unburdened” is the keyword here: How much do you want to burden your family, as opposed to freeing them from caregiver obligations? Do you feel like a burden when you depend on them? Do you resent them because you’re dependent on them? Do any of them resent you? What family vs. caregiving conditions are you willing to accept, if any? These are not easy questions, but the earlier they’re answered post-injury, the better.

Who was Jeff Shannon?

Got some caregiver experiences of your own to share? Please tell you story below.

 

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