Reading the book about Kilgour’s life, one is reminded of “The Most Interesting Man in the World” commercials. A similar commercial featuring Kilgour would play something like this: “He has coached five volleyball Olympic gold medalists. He travels the world as an Olympic network broadcaster. The Pope once asked him for an autograph.” (The camera pulls back from a close-up to reveal Kirk in a power chair, complete with a chin control, while fascinated women and men hang on his every word.) “He is the most interesting man in the world.”

At age 46, author Begley was a divorced mother of three grown children, content with her life in the mountains of Vail, Colorado. Toned, athletic, well educated, and financially secure, the one thing she was missing in her life was true love. As a self-professed sports junkie, she heard that Kilgour – who was 47 and living in Southern California – was looking for an attendant to travel with him to Atlanta for his upcoming broadcast of the beach volleyball match at the ’96 Olympics. A perk of the gig would be accompanying Kilgour with an all-access pass to the games. Begley was determined to get the gig, despite having no knowledge of quadriplegia or attendant care. She phoned Kilgour and pursued the idea of being his attendant at the games. Several phone calls later he agreed to have her fly out to his home in Southern California for a week to learn how to be his attendant; a training trial to see if it would work.

Through Begley’s record of the week of training, the reader gets an in-depth look at Kilgour’s daily routine – made more challenging by his 6’4”, 200 lb. body – and how he managed many of the challenges of quad life, including finding and keeping good attendants on the minimal salary allotted by the state. It explains the two-hour process of getting up, bathing, shaving, bowel and bladder routine, getting dressed, all the while highlighting the key to Kilgour’s success: hard work, attention and pre-planning the finest of details, including alternatives if things went wrong. Some of the fine details include that he wore a corset to help with breathing and to make him appear slimmer, and he wore clothing designed to look good sitting – all tactics to stay competitive in broadcasting. And how he constantly monitored his health, paying close attention to his skin and the importance of a cushion – Kilgour used a High Profile ROHO.

Begley says that at first the attendant duties were overwhelming for her, but with Kilgour’s calm encouragement and playful humor, she catches on. She becomes fascinated by his stories, of his life before his accident: growing up a competitive athlete, surfing, playing beach volleyball and skiing, later becoming a star volleyball player for UCLA, touring the country with Wilt Chamberlin as a member of Wilt’s Big Dippers volleyball team, being the first American to be recruited to play professional volleyball in Italy – a sport there second only to soccer in popularity – and becoming a national sports superstar in the process.

Begley becomes even more fascinated with the way Kilgour handled his injury mentally, explaining that he allowed himself only one night of crying after his injury, then decided to be the best quadriplegic who ever lived. She notes that he chose to live by a quote from John Milton’s Paradise Lost: “The mind is its own place, and in itself/Can make a heaven out of hell, a hell out of heaven.” Kilgour chose to make a heaven out of hell; he chose to find happiness by living in the “here and now” and appreciating everything as it was happening.

(This personal philosophy would serve Kilgour well. After his injury Kilgour coached volleyball, became an actor, a writer, a producer, a disability consultant, a motivational speaker, a voice-over talent, a network broadcaster and a volunteer for countless organizations.)

With each day of her new job, Begley is becoming comfortable with all of the attendant duties, and she and Kilgour are becoming drawn to each other. By the end of the week they fall deeply in love.

After a period of long distance dating, Begley goes to Southern California and moves in with Kilgour. They want to get married but Kilgour is caught in a financial trap all too common for people with high level injuries: he can only earn so much before he would be cut off from SSDI benefits and MediCal (California Medicaid). As a married couple, the addition of Begley’s income would cause him to lose these vital benefits – something even her portfolio could not afford. So they chose to live as fiancées.

We learn about the couple’s extremely busy life, from vacations to Hawaii and Europe, to an in-depth, backstage view of the ’96 Olympics in Atlanta, to attending various receptions and events where they rubbed elbows with movie stars – many of whom were friends of Kilgour’s. And this is all squeezed in between Kilgour’s many projects and Begley attending law school.

The author explains how Kilgour travelled both domestically and internationally, at times taking flights independently. She explains how he had a very specific system, which he directed, when having his chair prepared to load in the cargo hold of the airplane, right down to having directions printed in different languages, specific tools, bungees and straps to keep parts secured and with the chair.

The book follows the couple as they fly to Italy where Kilgour would be part of a celebration and Mass by Pope John Paul II. Years earlier Kilgour had written a poem – in Italian – about disability. A famous artist picked up on the poem and included it in one of his paintings. As the painting earned notoriety, so did Kilgour’s poem. As a result, Kilgour’s fame in Italy grew, arguably more as a poet and a man of indomitable spirit and hope for a happy life than as an athlete. Kilgour was part of a day-long celebration attended by more than 150,000 people and seen by millions on TV. The following day, Belinda and Kilgour had a private meeting with the Pope, who requested Kilgour sign (with his mouth stick) a card with the painting on one side and the poem on the other side. (You can read Kilgour’s first-hand account of this event in his column, “The Call to Vatican City”, which appeared in New Mobility, May 2002.)

Begley shares details as Kilgour’s health fails – 26 years after his injury, when he was only expected to live 10 – in a brave, year-long battle. In and out of hospitals, fighting sepsis, successfully coming back from being intubated, getting off of a respirator and fighting for life to his last breath.

In one of the many powerful quotes in the book, Kilgour describes his life and his accident. “I have no regrets. I love my life. If I had the power I would not change one thing. Nothing, and that includes the accident, especially the accident. Were it not for my injury I would have had a great life. I would have had some cute kids and been well off. If I had played in Italy a little longer, I would have ended up coaching there and making a million bucks a year. Yeah, I would have had a nice life, but I would never have had the experiences I’ve had as a disabled person. My life is so much richer. I know that sounds like crap, but I mean it. I see things in a different way, and I understand exactly what is important in this life. I know how to be happy. No, I don’t regret the accident because I like the view from this chair. Not that I would recommend to anyone else to give it a try.”

The book is available on Amazon.com ($11.99 in paperback) and on Kindle (for $4.99), and the Kindle version is available to borrow for free from KDP Select (Kindle Direct Publishing, an Amazon company) for Amazon Prime customers, through August 9, 2013.

References:

“Lucky Break: A Love Story” on Amazon

“Lucky Break: A Love Story” – Official Website

“The Call to Vatican City”

April 2013

“PECOS” has been talked about for many years in the U.S. Healthcare Industry.  It’s a very serious issue for any health care provider in the U.S., but I am sure many have no idea what it means or how it applies to them, their businesses or referral sources and prescribers.

PECOS, CMS’ “Provider Enrollment, Chain and Ownership System”, has been talked about a lot in the U.S. Healthcare industry since its initial introduction in 2003, and the introduction of its internet-based version in 2009.  It’s a very serious issue for any health care provider in the U.S., but I’ve learned many providers have no idea what it means or how it applies to them, their businesses or referral sources and prescribers.  Even though CMS has delayed the May 1 registration deadline, it’s vital that all Durable Medical Equipment (DME) providers become educated on PECOS.  DME’s who fail to follow the proper course may, as in stretches of the Pecos River in New Mexico and Texas, find themselves navigating troubled waters.

Some basics: The intent for PECOS was for CMS to create one gigantic database where information on ALL Medicare providers exists.  According to the CMS.gov website, “Internet-based PECOS will allow physicians, non-physician practitioners and provider and supplier organizations to enroll, make a change in their Medicare enrollment, view their Medicare enrollment information on file with Medicare, or check on status of a Medicare enrollment application via the Internet.”

Historically Medicare provider enrollment has been handled haphazardly.  For DME providers, there has always been one entity that handled the process (the National Supplier Clearinghouse, NSC), albeit we have questioned the quality and accuracy of the NCS process – especially when you consider the numerous provider (PTAN) numbers that have been issued over the years to “questionable” providers– it was a better system than previous approaches because there was one entity responsible for maintaining all DME provider enrollments.

In terms of other providers – and think of the volumes of types: hospitals, doctors, labs, home health agencies, etc. – the process was much more fragmented.  For many, the carrier in a state that processed the claims for that entity also enrolled and maintained the providers.   For example, in North Carolina, CIGNA was the physician Part B payer and therefore handled that enrollment process and Palmetto GBA (BCBSSC) handled the hospitals.  Similarly, for a home health agency in Alaska, the carrier is Noridian Administrative Services.  As a result, there are numerous databases of Medicare providers based both on the type of service they provide and their geographic location.  For example, if you had a doctor that was part of a medical group that had offices in two adjacent states, the doctor could end up with multiple provider numbers as an individual physician, as part of the medical group, in each state, etc.

OK, so who cares?

Well, CMS decided there needed to be one repository of ALL Medicare providers, regardless of the type of service they provide or their location, and PECOS was created.  As of this moment in time, the process for enrollment hasn’t really changed.  Essentially all entities still enroll with local carriers and the National Supplier Clearinghouse (NSC) exists for DME providers.  What it does mean is that all of the carriers and the NSC upload data to a central database called PECOS.

The PECOS database is intended to be the source of all Medicare providers, everywhere.  Once it is completely created it will probably be used to track activity across the spectrum of healthcare so that Medicare can really know who is providing what types of services and where.

So now you might ask, why should I care?

One of the goals of PECOS was to make sure only enrolled Medicare providers could refer patients for Medicare services.  Quite frankly, it makes sense.  How can an MD order a wheelchair for a patient if they are not even a Medicare enrolled physician?  So now you can see how PECOS can quickly have an impact on the providers of durable medical equipment and the end users that need such equipment.

So now that you understand the potential benefits of PECOS, what are the potential “troubled waters?”

Here is the deal:  Sometime after May 1, 2013 or the delayed deadline that CMS announces, Medicare will start denying claims for DME if the prescribers NPI (National Provider Identifier) that is referenced on the claim is not found in the PECOS database.

Many prescribers have numerous NPI numbers, for each location where they treat patients, for the group practice itself, etc. and they (or their staffs) are comfortable using different NPI numbers based upon these geographic or group variations.  Once PECOS takes effect, however, a DME provider must reference the individual prescriber’s NPI on the claim, not the group AND the name configuration must exactly match the PECOS record.  In other words ‘Bob’ Baker may need to be Robert Baker.   Based upon early reports of enrollment patterns, the physician community seems to be the most under-informed of the importance of enrollment, and lags other segments significantly.  Unfortunately for our industry, DME may end up paying the price for their “casual” attitude.  For example:  There may be physicians out there who are considered hospitalists (employed hospital staff members) that never bill directly for their services.  These physicians had no reason to enroll in PECOS and even though they participate in ordering DME for hospital discharges, the DME company cannot get paid based on their order as of the new deadline established by CMS.

The theory is that the majority of current mismatches in the claims approval process now are due to this, wrong NPI #s, wrong names, and unregistered referrals… but who knows for sure.

What we do know is that claims will start being denied after the new deadline for DME suppliers.

Many suppliers have been tracking their error rate as remark codes have been reflected on claims for many months to let the provider know that the referenced ordering prescriber is not in PECOS.  In other words, leading up to the new deadline, currently Medicare has been paying claims, but they put a comment code of N264 or N265 that indicates “missing/incomplete/invalid ordering physician provider name” or “missing/incomplete/invalid ordering physician primary identifier”.  This translates into “Doctor is NOT enrolled in PECOS”.  As you can imagine, most providers are so busy responding to audits and real denials that few have had much time to pay particular attention to this notice.

At this point it is difficult to tell what percentage of claims providers have that they will deny.  I have heard numbers as low as 2% and as high as 9%.  While this seems low, even 5% of claims can mean hundred of denials a month; AND that is on top of all other denials.

Impact to the industry?

Initially more denials!  All of those remark codes that were or were not looked at will now be denial after the new deadline, at which time providers must pay attention OR not get paid.  Not only is this an issue for new referrals, but also for all of a provider’s existing patients where this remark code has been indicated on claims!  Claims for a capped rental that has been paid in the past could still be denied as of the new deadline.

What HME Providers Need To Do.

1.  For existing patients, providers need to ensure the NPI numbers referenced in their databases and the prescriber names are exactly correct!  If they aren’t correct, providers need to get them corrected and their systems updated prior to filing claims in May.

2.  For new referrals, providers need to establish a process at intake to verify that the ordering prescriber is indeed enrolled in PECOS.  There are many websites (HIPAASpace.com as an example) that provide this service, and most software applications have a program to check.  If the prescriber is not enrolled, providers need to establish a process to seek another physician or to decline to service the patient.

3.  Providers also need to establish a process for denied claims.  At this point CMS has not issued direction on how the claims will be denied.

• Can providers bill patients?  Unknown…

• Can providers use an ABN and hold a patient accountable?  Unknown…

• Can providers rebill once a prescriber enrolls?  Unknown…

Clearly, CMS needs to issue direction to the DME MACs on what and how they will handle these claims.  In the interim since we really don’t know what the options are and how the carriers will handle PECOS-related issues, providers need to be super-diligent in getting ready for whatever final guidelines CMS publishes.  Until this direction is issued, providers need to clean up databases, develop procedures to avoid PECOS-related denials on new orders being placed after the new deadline, and develop a strategy to handle the volumes of denials they will be faced with after this critical date. For up to date information on the new PECOS deadline, visit www.aahomecare.org.

Among my jobs, I write about traveling in a column called “Travel Matters” for New Mobility magazine. In addition to my own travel experience, I’ve learned valuable travel tips writing columns and profiles.  In March, I went on a seemingly “easy” one-hour flight from Sacramento to Los Angeles to attend the L.A. Abilities Expo, a trip that seriously tested many of my travel tips.  Here’s a look:

Skin protection on aisle chairs:  

The surfaces of some aisle chairs on planes offer, at best, minimal skin protection. Most of them, however, offer no skin protection. Over the years, I’ve written about quite a few wheelers that have experienced skin breakdown caused by aisle chairs, especially as their skin gets more fragile with age. At 53, and in my 28th year as a para, this is something I’m well aware of.

Tales of aisle chair-induced pressure ulcers I’ve written or heard about were either the result of spending too much time strapped in the aisle chair or from a hard or worn surface of the aisle chair itself. For this reason, I always travel with THE ADAPTOR® PAD by ROHO in my daypack and put it on the aisle chair before transferring.

The least amount of time spent in an aisle chair the better. When boarding the plane, I make it a point to be sure there is clear path to my seat with no other passengers clogging the aisle and that the aisle chair attendants are ready to go before transferring to the aisle chair.  When deplaning, I make sure the path is clear, my chair is ready and waiting at the jet way and the aisle chair attendants are ready before transferring from my seat to the aisle chair.

THE ADAPTOR PAD by ROHO adds a layer of skin protection on aisle chairs.

Putting your cushion on the airplane seat:

I place my wheelchair cushion on the airplane seat—being sure it is properly oriented, with the back of the cushion at the back of the seat, and the seatbelts are cleared to the sides of the seat—before transferring onto my seat.  At cruising altitude, the cabin pressure of an airplane is the equivalent of being on top of an 8,000 foot mountain—this means a ROHO cushion will become quite firm, so I open the air valve and let some air out.  When I land, I re-inflate the cushion. As a caveat, don’t bother with the ROHO inflator pump; I clean the air valve off with a handi-wipe and blow into the valve to re-inflate the cushion.

Place wheelchair cushion on seat, being sure it is properly oriented with the back of the cushion at the back of the seat.

Protect your skin on accessible hotel shower benches:

The surfaces of hotel shower benches are usually rock-hard and.to make matters worse, they often have water-draining grooves in them that can become a recipe for skin breakdown.  THE ADAPTOR PAD provides great protection for this, and I always use one.  However, as the photo shows, this “accessible shower” was an epic fail because the water control was out of reach from the shower bench—a problem I’ve encountered before. Who designs these things anyway?

My solution in this case was placing the hose of the shower nozzle in between the grab bar, turning on the water and adjusting the temperature while still in my wheelchair, then transferring onto the shower bench while pushing my chair out of reach of the water. I lifted the nozzle up for my shower, finished, placed the nozzle back in between the grab bar, transferred back to my chair and turned off the water.  I somehow managed this feat three days in a row without soaking the chair.

THE ADAPTOR PAD provides great skin protection for hard shower benches. In this case, the shower bench was out of reach of the water control handle. Epic fail.

After three exciting days at the Abilities Expo, I returned to LAX with plenty of time—or so I thought—to make it to my quick one-hour return flight.  After passing through the long TSA line, I found my return flight was leaving from a satellite gate serviced by bus located outside the first floor.  I went to the accessible elevator, only to find it was out of service.

Out of Service…

By the time I finally located a working elevator and took the bus ride to my gate, it was time to board.  Unfortunately, I had forgotten one of my important travel tips.

When booking a flight, ask for a seat with a moveable aisle armrest:

Although bulkhead seats have more room, the armrests don’t move. Requesting a seat with a moveable aisle armrest–usually the seat behind the bulkhead–can be done when booking a flight or during check-in. Moveable armrests make it easier and safer to transfer from the aisle chair to your designated seat. I know stories of people that have gotten serious pressure ulcers from bumping their backsides on a fixed armrest during a transfer. Since I forgot to ask about this, and it was a full flight and time to pre-board, I channeled my inner Homer Simpson and thought: DOH! Fortunately, I was able to direct the aisle chair attendant to position me for an easy transfer.

For bulkhead seat transfers, position aisle chair toward bulkhead seat, then push into bulkhead row for easy transfer.

How to empty your bladder while flying.

Bladder management while flying is a subject near and dear to my kidneys, and something I wrote about in “Bladder Matters: Airline Bladder Management.”

http://www.newmobility.com/articleView.cfm?id=12014&srch=Travel%20Matters

The bottom line is to try to avoid having to empty your bladder while flying by keeping fluid intake to a minimum before a flight and avoiding coffee and other caffeinated drinks. Caffeine is a diuretic and causes your kidneys to work overtime.  On this particular day, waiting for my cab for the airport, I was thirsty and tired, so I drank a cup of coffee and a bottle of water. I thought to myself, “I have plenty of time and it’s only a one-hour flight!”

Because of the gate change and the elevator debacle, I was running late and didn’t have time to visit the restroom before boarding the flight. Again, my thought process was, “It’s a one-hour flight and my bladder isn’t full…yet.” Like clockwork, the sardine can of a commuter jet, with every seat full, pulled back from the gate right on time and proceeded directly to the departure runway, where unfortunately, it proceeded to stop. The engines shut down and the captain announced that due to air traffic we would be waiting for at least an hour before take-off.  DOH!

Now I was in trouble.  My bladder was quickly filling up and the plane I was on was so small they didn’t have an onboard aisle chair for the restroom.  Over the years I’ve heard tales of (male) wheelers discreetly draping a blanket over their laps and catheterizing into an empty plastic water bottle or closed system catheter (internal catheter that drains into a bag that can be capped when finished) bag.  I asked the flight attendant if they had a blanket—despite the fact that it was quite warm—they didn’t.  Luckily, I had my jacket and a closed system catheter—also luckily, the passengers around me were either dozing or immersed in a book.  Throwing embarrassment and modesty to the wind, I draped my jacket over my lap, hoping the plumbing wouldn’t come apart and hoping my jacket would stay tucked around my sides and not slide off, which would leave me in full flash mode, complete with filling a clear catheter bag.

Fortunately, it worked! The closed system bag was full and capped, my bladder was empty, pants zipped up, jacket still over my lap and nobody seemed to notice.  I managed to continue my ruse and carefully slid the capped-off, closed system bag inside an airsickness bag and sealed the top. Just as I was finishing doing that, the plane’s engines revved up and the captain announced we would be on our way. AS it turns out, we only sat on the runway for 10 minutes instead of the hour we were told. DOH!

Bladder management!

Resources:

=Accessible Air Travel, A Guide for People With Disabilities:  http://www.unitedspinal.org/pdf/2012-accessible-air-travel-brochure.pdf

=Bladder Matters: Airline Bladder Management:  http://www.newmobility.com/articleView.cfm?id=12014&srch=Travel%20Matters

=Travel Matters: Air Travel 101:  http://www.newm

In the last seven years Ecuador has undergone a paradigm shift in support, opportunity and perception for people with disabilities. This sudden shift started with one man: Lenin Moreno.

In 2006 Lenin Moreno, 59, a paraplegic, was elected vice president of Ecuador. Two months ago Moreno became acting president when President Correa took a leave of absence to campaign for his successful February 17th re-election bid, making Moreno the world’s highest-ranking government official who is a wheelchair user.

For Ecuadorians with disabilities, Moreno’s election was a crucial turning point toward inclusion and a bright future.

When Moreno took office, the government didn’t even know how many people with disabilities lived in Ecuador. Moreno, a fierce advocate for people with mental and physical disabilities, set out to change that, and to provide support, opportunity and inclusion. During his seven-year term in office he has helped turn Ecuador into one of Latin America’s most progressive countries for people with disabilities.

In a recent speech, Moreno pledged that the government would reach out to all people with disabilities who need help, saying “This is a revolution”.

He has put his words into action! During Moreno’s time in office, the government has increased state spending on financial, technical and professional assistance for people with disabilities from $2 million a year to $150 million a year! Wheelchair ramps are springing up in major cities, people with severe disabilities now receive a monthly stipend from the government, and Moreno helped enact a law that businesses must set aside at least 4 percent of their jobs for people with disabilities.

In a February 2013 story by John Otis on Public Radio International’s The World, Ecuadorian Sarita Carlsoma explains that 20 years ago she was studying to be a doctor when she became a paraplegic and couldn’t continue her education because the classrooms were inaccessible. As a paraplegic in Ecuador, finding a job was tough and Carlsoma tried finding full-time work for 20 years.  Under the new law aimed at bringing disabled people into the workforce, she was hired by an oil company.

“He [Moreno] has achieved so much,” Carlosama says. “But even if he hadn’t done anything, just the fact that the vice president is in a wheelchair changes perceptions about disabled people.”
Another project under Moreno is providing free artificial limbs for poor Ecuadoreans—limbs that used to be very expensive because they were imported into the country. The government set up three manufacturing shops to build prosthetic limbs in Ecuador in what turned out to be a program with multiple benefits:

• The limbs are much less expensive to produce domestically than to import;
• It creates jobs for workers making the limbs; and
• Easier access to prosthetics allows the disabled to integrate into society and      find work.

To date, more than 4,000 people have received prosthetic limbs under the program.

Other programs provide braille texts and computers for visually impaired people.

Moreno is an admirer of theoretical physicist Stephen Hawking, and refers to him as “The greatest example of the power of a man in a wheelchair.”  Six months ago he met with Hawking and they hit it off.
Ironically, paralysis was a driving force for Hawking and Moreno in terms of their true power and calling. Although Hawking was always known to be brilliant, his brilliance – by his own admission – allowed him to be somewhat lazy in his studies.  He says he didn’t really apply himself until after he was diagnosed with ALS.  It was then he took to study and work with urgency.
Moreno came to his advocacy role in a similar way. Like many upper class Ecuadorians, he rarely noticed people with disabilities—a prosperous businessman and a public official, he was too busy being an overachiever.  That is until 1998, when he was shot and paralyzed during a robbery.
The shooting left Moreno with intense pain, and put him into a severe depression – bed-ridden for four years. During that time he discovered alternative medicine, including laughter therapy.  Laughter releases endorphins, distracts the brain, and relieves pain and stress. He focused on laughing a lot – watching comedies, memorizing jokes. The therapy worked. His pain and depression lessened and his condition improved.

Before being selected as running mate for Ecuador presidential candidate Rafael Correa in the 2006 election, Moreno’s laughter therapy enabled him to break out of four years of pain-wracked, bed-ridden depression and write five books on laughter therapy.  Moreno’s books include Don’t Be Sick, Laugh, and The Best Jokes in the World.  He also formed a foundation to integrate humor into everyday life and became a motivational speaker. Later, he was named the director of the country’s institute for people with disabilities.

Improving lives and providing opportunities for people with disabilities is powerful.  And Moreno’s work is having positive waves beyond Ecuador’s borders.
In 2012, Moreno was nominated for the Nobel Peace Prize for the transformation he has brought about in Ecuador, which, under his watch, has become one of the most progressive nations in Latin America in providing financial, technical, and professional assistance to people with disabilities. A shining example, many Latin American governments now turn to Ecuador for advice on policies for disabled people.
Moreno is quick to point out that he is just the catalyst that got things going. He is quoted in an article in The Guardian as saying “This was not because of me. It was because of the citizens. I just lit the flame and it spread quickly. But in regard to what we have achieved for disabled people through politics, it is only 20 percent of the goals I set. We need structural change.”
At the top of his game and a sure thing to get re-elected, Moreno recently announced he is stepping down. News reports speculate he will run for president of Ecuador in 2017.
On February 17, Rafael Correa was re-elected president, and celebrated his victory with Vice-President Lenin Moreno and his Vice-President-elect Jorge Glass.
On stepping down from his political office, Moreno says he is more interested in humor, equality, health and ecology than the trappings of high office. Spurred by his meeting with Hawking and his own experiences, among the projects to which he will now devote himself is a book on the connection between quantum physics and human values.
Another Lenin Moreno quote from The Guardian article capsulized this man’s motivation: “Power comes with a stroke of fortune and you should quickly leave it behind. But while you are in that space, you must take advantage of it to realize your dearest ambition. For me, that was to promote the rights of the disabled.”

Lenin Moreno

“How do I know when it’s time to replace my cushion?” This is an important question that frequently comes up at consumer shows, a question that has a several answers.

The first and foremost reason to replace your cushion is if you have a change of medical condition that effects your skin such as weight gain, weight loss or if the cushion you are on is showing signs that it isn’t doing an effective job protecting your skin— if you start to notice your skin remaining red after a long day of sitting–insurance should pay for a new cushion with the proper seating evaluation.

This is why it is crucial to check the skin on your butt with a mirror every evening and morning—taking a few moments to do a mirror-skin check gives you the best odds of catching a potential skin problem early, before it progresses into a serious pressure ulcer.  If you start seeing a red area at the end of the day, it is important to tell your doctor and ask for a referral for an evaluation with a seating clinician—as soon as possible. Don’t wait!

This recently happened to me.  I’m 52 and in my 27^th year as a T10 paraplegic and except for one tiny pressure ulcer right out of rehab I’ve had healthy skin.  But as we age our skin gets thinner. Lately I’ve noticed some redness on my left ischium during my evening mirror checks. I have a pelvic obliquity; my left ischium is slightly lower than my right. I tried readjusting the pressure in my cushion and doing extra weight shifts but the redness would return by evening. Although the redness blanched—turned white when I pushed on it with a finger and would disappear within 30 minutes– I knew I shouldn’t have any redness at all.

I took this very seriously. I know way too many wheelers that “never have skin issues” and felt they didn’t need to do mirror skin checks anymore.  Then somewhere 15 or more years after their injury they end up with a pressure ulcer, skin flap surgery and 3-month hospital stay.

The usual protocol in my case would be to phone my physician right away and get a referral to the first possible seating clinic. AND have the doctor emphasize, “there is compromised skin”.  This should get a timely seating clinic appointment because a new, properly fitted cushion is much cheaper than hospitalization and a skin flap.   If the seating clinic determined the cushion I was currently on was not adequate and I needed a new cushion, I would be sure to have them write that my skin is “compromised” on the Letter Of Medical Necessity.  As always it is important that the Letter Of Medical Necessity and cushion prescription say the exact seating needs; for example, ROHO® HIGH PROFILE® Single Compartment Cushion (4-inch).

I went through this once—26 years ago—with a tiny pressure ulcer due to the wrong cushion.  Because of the pressure ulcer I got a timely appointment at a seating clinic and Medicaid quickly approved payment for a ROHO cushion–an upgrade from the inadequate memory foam cushion on which I had been sent home from rehab.

In my current instance I was fortunate that I know a physical therapist that is an expert in seating and positioning. She took all of my seating information into account and suggested I switch to a ROHO® QUADTRO SELECT® HIGH PROFILE® Cushion, that has deeper cells than the ROHO QUADTRO SELECT that I was currently on. This would give me deeper immersion sinking into the cushion to provide more support in the areas surrounding my ischiums, and allow me additional depth to adjust the cushion so the left rear quadrant is significantly lower than the right without bottoming out—thus taking weight off of my ischium.  A disclaimer: Since I am in the ROHO elite program I didn’t have to get insurance approval.  Several weeks ago I received my ROHO HIGH PROFILE QUADTRO SELECT.  Evening mirror skin checks reveal success!  At the end of a long day my skin looks fine!

Another important reason to get a new cushion is time.  Every brand, make and model of cushion will break down over time. When this happens the cushion no longer supports and protects your skin the way it was designed—putting you at risk of a pressure ulcer.  Even if the cushion you are using is working fine, it is important to replace it before it starts to break down!

How often funding sources will reimburse a new cushion varies from one type of insurance to another.

In order to get a new cushion before your current cushion breaks down it is important that you are the squeaky wheel and ask about getting a replacement cushion. The way to do this is contact your local DME (durable medical equipment) supplier and tell them you need a new cushion. They will be happy to guide you through the step by step process of getting a new cushion, based on your seating needs, including gathering your insurance information to let you know how often your insurance will reimburse a new cushion.

If you don’t already have a working relationship with a DME supplier, locating one is your next step. ROHO makes this easy. To find a DME supplier go to www.therohogroup.com/where_to_buy.jsp and click on Buy from an Authorized Retailer Near You.

You can find Medicare DME provider(s) in your area by going to www.medicare.gov. On the main page pull down Resource Locator, scroll down to Medicare Supplier Directory, from there, type in your zip code and click submit. On the next page check Wheelchair Seating/Cushions and hit view results. The “default” setting on View Results is 10 miles — to find more DME supplier options it is helpful to expand the View All Suppliers Within (on the right side of the page) to a larger distance in order to find a Medicare DME provider that is also a ROHO authorized retailer.

It’s much better to be a proactive “squeaky wheel” and work on getting a replacement cushion while the cushion you are sitting on still provides proper support for your skin than waiting too long and risk developing a pressure ulcer because your cushion gets so old it is breaking down.  Plus, getting a new cushion while your old cushion still provides proper support means you now have a back up cushion—one you can use while cleaning your new cushion and/or to use on the seat of your car for extra skin protection while driving.  If your cushion is getting replaced, be sure that all of your paperwork specifies the exact manufacturer, model and size of the cushion you were fitted for.

Keep doing daily mirror skin checks and replace your cushion before it breaks down.  Stay healthy my friends!

___________________________________________

UPDATE: Because of this post, we received the following response from Paul Tobin -

Dear Friends & Advocates,

I would like to personally thank you for your overwhelming support to end unacceptable delays for wheelchair repair services in the state of Illinois.

These delays average 60-90 days due to a provision in the Save Medicaid Access and Resources Together (SMART) Act that requires prior approval for all wheelchair repairs for Medicaid beneficiaries.

Because of your willingness to act, we were heard by policy makers and United Spinal has been given the opportunity to sit down at the table with Illinois Medicaid to propose solutions to this issue.

Thanks again for being the driving force toward positive change for our community!

Paul J. Tobin
President & CEO
United Spinal Association

Illinois wheelchair users need your help:

Access to wheelchair repair services for Illinois wheelchair users could take an estimated 60-90 days due to a provision in the Save Medicaid Access and Resources Together (SMART) Act. For example, one supplier currently must hold 700 repair orders due to this Act.

Please help put an end to these unacceptable delays!

The consumer grassroots efforts on the Illinois Medicaid wheelchair repair prior approval issue is blasting off.  Along with our local chapter and national grassroots following, Users First has reached out to other consumer groups in Illinois to respond to the link below:

http://www.usersfirst.org/long-delays-for-wheelchair-repair-services-in-illinois-jeopardize-lives/

We can stop this. The more people who take just a moment to click and take action, the better. Please act today. Share the above link with your networks.
Users First will be following up with the results of the number of people mobilized and the affect on Illinois Medicaid policy. Visit www.usersfirst.org for future results of this effort.

Thank you!!

Ann

Ann Eubank, LMSW, OTR/L, ATP, CAPS
VP Community Initiatives
Users First, a program of United Spinal Association

75-20 Astoria Blvd, Suite 120
East Elmhurst, NY 11370-1177
Office: 718-803-3782 ext. 7271
Web: www.usersfirst.org

Facebook: www.facebook.com/UsersFirstAlliance

You may also contact Ann Eubanks by email at online.relations@therohogroup.com.

Move over Artie Abrams from Glee, there is another wheelchair-using character on TV, this time it’s Riley Wallace, a 20-something paraplegic who was introduced this fall in the fifth season of 90210 on The CW Network. Unfortunately, like Artie, once again Hollywood ignored the talented pool of SAG (Screen Actors Guild) performers with disabilities who are wheelchair users and cast a non-disabled actor, Riley Smith, for the part. And once again, Hollywood misses the mark in many obvious areas, some which would surely land a real paraplegic in the hospital with a pressure ulcer.

From the moment Smith’s character “Riley”– a complete paraplegic with a low injury level that is at least a few years post injury—is introduced, it becomes apparent that the TV show didn’t bother to hire a consultant (an actual wheelchair user) to create an accurate portrayal of a paraplegic.  When we first see Riley, as an outpatient in a physical therapy gym, he is sitting on a wooden bench, doing bicep curls with his wheelchair nowhere to be seen. Are you kidding me?  Sitting on a wooden bench with no cushion?  And in a physical therapy gym, no less? Completely implausible.  Later in the scene, a physical therapist asks Riley if he is done lifting and brings his chair, complete with a foam cushion. No way a para would allow his chair to be taken away in this type of situation. . The obvious – a cheap foam cushion on the chair puts it over the top. How Riley has made it this long without a major pressure ulcer is beyond me. In real life, if a person with SCI (spinal cord injury) disregards their seating they will end up with a pressure ulcer—one that could be avoided. Perhaps this is what the writers are planning for thesixth season of 90210?  Will the storyline be that Riley develops a pressure ulcer, is hospitalized, and the wound causes an infection, drama building as he is near death from sepsis caused by the pressure ulcer?

“The portrayal is absurd,” says Tricia Garven, a physical therapist, masters of physical therapy/licensed (MPT/L), assistive technology professional (APT) and clinical applications manager for The ROHO Group.  “The reality is sitting on something unpadded, and sitting on a basic foam cushion on your wheelchair is a setup for a pressure ulcer and lengthy hospital stay, one that can easily run $100,000 or more.” Garven explains that because of funding cutbacks in the rehab industry, too many people are getting such short rehab stays they don’t fully learn you can’t sit on hard surfaces without a cushion.  “You may get away with sitting on a hard surface for a while, maybe even years but it is like playing Russian roulette, it isn’t a matter of IF you will get a pressure ulcer it is a matter of WHEN. The TV show does a serious disservice showing this,” she says.  “The same cutbacks result in people getting sent home without proper seating and positioning, a vital element because it is preventative — it helps prevent pressure ulcers and orthopedic problems” she adds.

Another area where the TV show misses is on Riley’s wheelchair. He is styling around in a properly fitted cool-looking wheelchair; except he is still using anti-tips! Seeing Smith try and play Riley as an active “in your face” heartthrob, wheeling around with anti-tips makes as much sense as an actor portraying an outlaw biker roaring around on a Harley with training wheels. He becomes more of a caricature than a character.

In interviews, Smith says his preparations for the show included the producers getting a chair two months in advance and he wheeled around his house and neighborhood.  Good start, but not obviously not enough–this reminds me of people that come up to me and say “I hurt my knee and spent a whole month in one of those [wheelchair] so I know what you are going through”.  Smith’s other preparation was speaking on the phone for two hours with Tiphany Adams from Push Girls. Wow, “talked with a para on the phone for two whole hours…”

“As an actor, from an actor’s prospective [wrong cushion, lifting weights on a wooden bench, anti-tips etc.] this is so frustrating because it just means the actor didn’t do his homework” says Tobias Forrest, an actor and singer-songwriter in his 14^th year as C5 Quad who plays the character Greg in “The Sessions.” “Half of an acting job is doing the work to develop a background for the character I’m playing—if I’m playing somebody from Louisiana, I shouldn’t be talking with a Texas accent” he says. “I create a whole biography of them. I know their birthday, their horoscope, and the names of their parents. I know the life that they lived up until this moment.”

Forrest says he knows of at least five Screen Actors Guild actors that are paraplegics in the Los Angeles area that fit the bill for Riley’s character.  “When a non-disabled actor is playing a paraplegic they need to do all of the background work,” says Forrest.  “How were they injured?  What is their level of injury? Do they have spasticity? What kind of cushion do they use?  Do they know about things like avoiding pressure sores?  If they have anti-tips on the wheelchair, why?”

A great example of the kind of work that a non-disabled actor should do to play a wheelchair user is John Voight’s preparation to portray a paraplegic in the 1979 movie “Coming Home”. Rather than wheeling around and making a 2-hour phone call to a para, Voight spent months wheeling with other paraplegics at Rancho Los Amigos rehab center and worked with with Jeff Minnebraker, a rec therapist and L1 para.  Minnebraker was also hired as consultant and an extra for the movie.  The result was an amazing, very realistic character—a character that that won Voight an Oscar for Best Actor.

“The fact that they [90210 producers] didn’t even audition [SAG actors] in chairs is their biggest sin,” explains Allen Rucker, acclaimed author, TV writer-producer, Chair of the Writers Guild of America West, Writers with Disabilities Committee and Co-Chair of the annual Media Access Awards.  “Casting people, it has been my experience, do care. The Casting Society of America, the casting guild and part of the consortium backing the annual Media Access Awards, definitely cares and is always promoting diversity casting. Most casters and producers down here [in LA] are not evil people. They are often unenlightened, sometimes lazy, and always under tremendous pressure to deliver.”

Rucker says the best way to get Hollywood to change and cast actors with disabilities to play a person with a disability is to contact the production company.  The same holds true for discrepancies like sitting on a foam cushion or using anti-tips. Other shows like medical or crime dramas hire consultants to get details correct because if they don’t the studio hears about it from their viewers. They should be held to the same standard when it comes to portraying a character with a disability—if enough people contact them perhaps they will get the big picture and hiring actors with a disability rather than a non-disabled actor “playing” somebody with a disability—a move that makes a much more powerful and realistic performance.

When contacting a production company, be sure to let them know which show you are contacting them about.

The production company for 90210 is CBS Television Studios:

CBS Studios Address:

7800 Beverly Boulevard
Los Angeles, CA. 90036

General Phone Number:

323.575.2345

CBS Studios Website

http://www.cbs.com/

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The holiday season is upon us, bringing with it some of the busiest travel days of the year as people embark on pilgrimages to spend quality time with family and friends.  For those of us who use wheelchairs staying with families and friends may mean dealing with less than idyllic bathroom access—and in some cases, situations that could be very dangerous to your skin, which is something I was reminded of on a recent visit to my parents. Here is a look at some potential skin dangers and how to protect against them.

*Toilet seats with sharp or hard edges.

A mirror skin check during a previous visit to my folks’ house revealed a round line of red skin around my ischiums (butt bones)—this was right after my pre-bedtime bathroom routine.  A mirror check in the morning showed it was gone and I didn’t give it much thought–until the same thing happened the next evening. This time a mirror check revealed the red line had returned–wider, warm to the touch and was still there the next morning. I looked at the toilet seat and saw that the inside edge was sharp—something that wouldn’t effect a person with standard muscle tone.  I was more than a little worried and also embarrassed.  Fortunately, I was headed home that afternoon. I kept close tabs on the redness, which subsided in about 5 days.  But if I had used the seat one more time, especially if I wasn’t doing mirror checks to see what was happening to my skin, I could have ended up with severe skin breakdown!

To protect myself from toilet seats with abrupt or sharp edges, I now travel with a ROHO Toilet Seat Cushion in my suitcase. I had a chance to try the ROHO Toilet Seat Cushion on the same seat during a recent 7-day visit with my folks. It took less than a few minutes to inflate the cushion(s) and snap the two straps on each side.  Mirror checks confirmed it worked great. No redness!

*Sliding Shower Doors.

Trying to transfer over the lip of a tub that has tracks for sliding shower doors is akin to passing over samurai swords–one slip could result in serious skin damage and turn a holiday visit into a hospital stay. The best way to protect your skin is by putting a bath mat over the tracks.  If a bath mat isn’t available, a towel will do; however, use caution as a towel can slide off the tracks the way during a transfer. Don’t leave anything to chance–put down a bath mat, cover it with a towel and a ROHO ADAPTOR PAD – a combination that enables an easier, safer transfer.

An option when visiting a home with a shower only, and no bath bench, is to put a towel on the floor, set an ADAPTOR PAD on the towel and do a chair-to-floor (towel/ADAPTOR PAD) transfer. The same bathmat and/or towel routine for bathtub lips, works to cover a “knife-like” lip that many shower doors swing into when they close.

Another option:  if available, put a plastic chair (like a patio chair) in the shower. Put an ADAPTOR PAD on the chair and then transfer onto the chair.

If there is a shower bench, since most of them are rock hard, again using the ADAPTOR PAD is a great option to protect skin during a relaxing shower.

*Bathtub and/or Shower.

I always sit on a bathmat and my ADAPTOR PAD in the tub or shower floor.  As I’ve previously written—in a pinch, sitting on a towel will do.

For shower floors I make sure the bathmat or towel covers from the “cheese grater”-like surface of the drain to protect my skin while being careful not to completely stop the drain.

*Bath Oils – Another Good Reason to Use a Bathmat.

If the previous bather was a fan of bath oils, the tub will be left as slippery as a buttered cake pan.  Despite being in a seated position, the floor of a slippery tub can cause sliding, thus endangering leg bones that may be fragile from years of SCI.

*Hot Water Dangers

For somebody with compromised or no sensation, water while bathing or showering poses the possibility of severe burns.  As I wrote about in Travel Matters: Hot Water and Rental Car Burn Dangers http://www.newmobility.com/articleView.cfm?id=12087&srch=hot%20water%20burns the ADA specifies that hot water coming out of bathroom, shower and tub fixtures in public accommodations must not exceed 120 degrees Fahrenheit.  However it is common for the people to turn the hot water heaters in their homes much higher.  Hot water that is 140 degrees Fahrenheit will cause a third-degree burn in five seconds!  I found this out the hard way. In my younger days I had the “bright” idea of turning the hot water heater way up to make showers last longer.  It worked—that is until I accidentally let hot water in the tub run against my feet—the water scalded my right foot and left a serious burn that required a hospital stay and months to heal.

When staying with friends or family I fill up the tub and before I get in, I check the water temp with my hand, and then get in.  For showers, the key is always have the water running on part of your body with sensation so you can feel if it is getting too hot.  This is more important when staying in older homes where water temps tend to vary, especially in a house with holiday guests where other people may be showering, doing dishes etc. at the same time.

If you want to be extra safe, carry a meat thermometer and run hot water over it to see if it exceeds 120 degrees Fahrenheit.  If it does, ask your host if they will turn down the thermostat on the hot water heater during your stay, and explain why.

If you do notice that hot water has been running against your skin, especially if your skin is red, immediately run cold water over it for at least 5 minutes or until the skin returns to a normal color.

*Heater Dangers.

Be aware of floor vents—at my folks home this vent is directly where my left foot rests while using the toilet.  It gets hot enough to severely burn skin with compromised sensation. My simple fix is to put a towel over it when using the bathroom.

*Heated Car Seat Danger.

Last but not least, be wary of heated car seats.  DO NOT TURN THEM ON!

As I wrote in Escaping the Hot Seat http://www.newmobility.com/articleView.cfm?id=11135 heated car seats can malfunction and get too hot.  For somebody without sensation this can create severe burns on the butt. I wrote about this issue in 2008, and cited Derek Johnson, an attorney for the Eugene, Ore., law firm of Johnson, Clifton, Larson and Schaller, that has been representing people with paralysis who have been seriously burned. The firm had already identified 63 people from various states who have suffered serious burns from heated seats. Considering there are hundreds of thousands of vehicles with heated seats in the United States, Johnson thinks the problem may be widespread.

These types of burns often result in lengthy hospital stays and permanently damaged, compromised skin.  Yet another reason to always sit on your cushion, even on a car seat.  And always check to see if the car has heated seats, and find out where the controls for the heated seats are to be sure they are in the off position.

Like a lot of things with SCI, holiday travel to stay with family and friends takes a little more awareness but it is well worth it.

I wish you a safe and fulfilling holiday season with family and friends!

___________________________________________

My previous column, The Importance of Back Support in Overall Health With SCI, discussed how crucial proper back support is; having a positive effect on everything from pressure reduction in the lower pelvis—meaning reduced risk of pressure ulcers—better posture, reducing or eliminating back and neck pain, healthier shoulders, to improved breathing.  This column is about how get the proper back support, including how to get it funded.

“There are a couple ways to go about getting the proper wheelchair back,” explains Tricia Garven, PT, ATP, Clinical Applications Manager at The ROHO Group. A rule of thumb is to have your wheelchair back evaluated each time you replace your wheelchair cushion—every three years, which is how often most insurance and funding sources will pay for a new cushion—something I wrote about last year in  “How Often Should You Replace Your Cushion?”

http://blog.therohogroup.com/index.php/2011/11/how-often-should-you-replace-your-cushion/

The steps on how to get properly evaluated for a wheelchair back and cushion (seating evaluation) start off with you being the squeaky wheel—you need to speak up and ask.  One way to start the process is to tell your physician you are due for a new cushion and ask for a referral to a seating clinic for a seating evaluation with a clinician—a PT (physical therapist) or OT (occupational therapist).

Another option for getting the process started is to contact your local DME (durable medical equipment) supplier and tell them you need a new cushion and require a seating evaluation to see if changes are needed in your current wheelchair back and/or cushion — they will be happy to guide you through the step-by-step process of getting the wheelchair back and cushion based on your seating needs.

If you don’t already have a working relationship with a DME supplier, locating one is your next step. ROHO makes this easy. To find a DME supplier go to www.therohogroup.com/where_to_buy.jsp and click on Buy from an Authorized Retailer Near You.

You can find Medicare DME provider(s) in your area by going to www.medicare.gov. Pull down Resource Locator on the main page, scroll down to Medicare Supplier Directory; from there type in your zip code and hit submit. On the next page check Wheelchair Seating/Cushions and hit View Results. The “default” setting on View Results is 10 miles — to find more DME supplier options it is helpful to expand the View All Suppliers Within (on the right side of the page) to a larger distance in order to find a Medicare DME provider that is also a ROHO authorized retailer.

Once you contact a DME supplier, be sure to ask the person working with you if they are an ATP (Assistive Technology Professional) and/or SMS (Seating and Mobility Specialist. These are credentialed professionals trained to identify postural (proper posture) and seating issues and have the knowledge to provide the appropriate back support and cushion solution to address your seating needs.  The ATP and/or SMS will gather your information, current wheelchair, wheelchair back, cushion, insurance information, etc. They will contact your physician and get a referral for a clinician to do your seating evaluation, or they can do the seating evaluation themselves.

The goal of a seating evaluation is to find out if your present wheelchair back and cushion is still appropriate, or whether your body has changed that may require an adjustment in your wheelchair back and/or cushion. “In order to make sure the back support is addressed during the evaluation, it is important to communicate with your clinician,” explains Garven. At the beginning of the seating evaluation, ask the clinician, “How does my posture look?  Does it look like my seat back is providing the proper support?  Would an aftermarket solid back improve my seating?”

Garven explains that changes in posture are gradual and can cause many problems including skin issues and reduction of function. During a seating evaluation it is important to tell your clinician if you have any redness or skin issues in the seated area of your pelvis, or back pain, or shoulder pain, or neck pain, or if you are finding it more difficult to push up hills or over small threshold—all of these are indicators of possible changes in posture. These changes can often be addressed and improved by proper back support. Garven explains that while most clinicians will put two and two together and look at back support as a way to address these issues, it is important for you to speak up and ask, “Is this something that additional back support can help?”

Most seating evaluations should include trying different wheelchair backs to ensure proper back support.  As an example, if somebody needs more posture support than their standard sling back provides, a clinician would put a ROHO® AGILITY™ Mid Contour Back System on their chair to see if it improves their posture.  When a wheelchair back maximizes posture and your function, the clinician has a match.  Following the seating evaluation, the clinician takes the information and writes a Letter of Medical Necessity to submit, along with a doctor’s prescription to the insurance company for the wheelchair back and cushion.

Sometimes circumstances require getting a new back support before it is time to get a new cushion.  Garven explains the sooner a posture issue is identified and addressed by proper back support the easier it is to correct. “Anytime you have issues that may be related to postural changes, like back pain, skin redness, shoulder pain, neck pain, trouble getting up hills or over small thresholds. You should bring this up with your doctor and ask if it may be a postural issue and ask for a referral to a seating clinic for a seating evaluation to look at a back support,” she says.

When it comes to funding wheelchair backs, Dave McCausland, Senior VP of Planning & Government Affairs for The ROHO Group explains that wheelchair backs are coded under Medicare (meaning they will be reimbursed with the proper documentation) and since Medicaid and private insurance companies tend to follow Medicare’s guidelines, he is confident that most will cover wheelchair backs as well.

Garven explains that the steps to get funding for wheelchair backs are the same as they are for cushions. That is, a Letter of Medical Necessity and a doctor’s prescription–like any custom mobility product, it is extremely important to make sure the exact make, model and manufacturer is on the Letter of Medical Necessity. For example, the Letter of Medical Necessity would include:

ROHO AGILITY Mid Contour Back System, 14“.

This ensures that your new wheelchair back is exactly what you tried, need and expect.  Although an ATP and/or SMS will know this, in order to get a wheelchair back funded, it is important that the Letter of Medical Necessity describes your “significant postural asymmetry” which is funding terminology for not sitting in a proper upright position, along with your diagnosis.

From there, the team gathers and organizes all the documentation. Then the DME supplier submits the paperwork to the insurance company for approval. If all goes well, your back (and cushion) is ordered and you receive the proper back support and are soon sitting up straighter, and looking and feeling good!

___________________________________________

It is unfortunate that media reports on Americans with Disabilities Act (ADA) access (Title III) usually focus on financial costs to businesses or municipalities, when the reports should be pointing out that ADA access is patriotic and profitable.

The crucial link to ADA access and patriotism became clear to me while doing research for an article and I interviewed Anthony Goldsmith, a Civil Rights Attorney, and member of the legislative committee of Californians for Disability Rights Inc., the oldest and largest membership organization of persons with disabilities in California.  Goldsmith recalled his father telling him about his time in the Army during World War II.  While stationed in Maryland he trained French troops to help liberate their nation. During this period Goldsmith’s father traveled to the nation’s Capitol and saw President Roosevelt getting carried up steps into congress in a way that would avoid people knowing that the President was paralyzed–something most people knew, but avoided talking about.

Goldsmith’s father told him how powerful this image was, and how it made him think, “What will happen to me if I come back from the war badly hurt, maybe without legs?  How will I get around?  How will I have a family? How will I support myself?”

The passage of the ADA in 1990 is a powerful reminder of how far our country has evolved in areas of freedom and equal rights since that time.

“Support Our Troops!”  This popular saying is often seen on ribbon-shaped stickers. It’s a great message and something we can all agree on. Our troops have pledged to defend our country and defend our freedoms including the freedom of equality–something we sometimes take for granted. They’ve pledged their defense even if it results in their permanent disability or untimely death.  For this we owe them our eternal gratitude.

According to the Bureau of Labor Statistics, over 600,000 veterans who served in Iraq and Afghanistan have a service-connected disability (injured while in the military). The latest U.S. census puts the total number of veterans living with service-connected disabilities at 3.4 million.

Imagine how cool it would be to start a campaign where businesses and municipalities that are accessible (curb cuts, ramps, accessible parking, etc.) put up signs and/or stickers proudly saying “In support of our troops we are 100% ADA accessible.”!!!  I submit, the most important step a business can take to show that they support our troops is to inves time and effort to ensure they meet ADA access standards. A fully accessible business shows respect for the freedom and equality that our troops have fought for.  Imagine the respect and sense of “thank you for your service” this would show our troops—taking action, providing access and equality as a sign of thanks and respect.

On the other hand, imagine what it must be like for veterans that became disabled fighting for our freedom when they are excluded from entering a business, or excluded from parts of it because it isn’t accessible, only to hear the same tired old excuses those of us with a disability have heard for years;  “I didn’t know we had to be accessible” or “I thought this business was “grandfathered in. (There is no such thing)” Or worse, “Gee, we didn’t think there is a problem. We’ve never seen people in wheelchairs in our business.”  Umm, you have steps coming up to your entrance…  Think of the message this conveys to our troops.

Unfortunately ADA access and business is often portrayed as an “Us vs. them issue.” It isn’t. ADA access is an US issue—a disability can happen to anybody at any time, and if you live long enough you will acquire some type disability.  Unfortunately, most media stories incorrectly focus on cost or difficulties in understanding ADA access law.. It is rare that media stories point to the many of resources available to help businesses become accessible, starting with a $5,000 per year federal tax credit for access improvement. To help businesses understand ADA access laws and codes, the ADA National Network has links to ADA Regional Centers will help businesses understand access requirements. See Resources  www.adata.org

In addition to being patriotic, ADA access is profitable, allowing an estimate of probably 40% more consumer dollars into a business!  A good example of this profit is the National Disabled Veterans Winter Sports clinic, an annual event held in early April in the tiny village of Snowmass, Colorado.  During Winter Sports Clinic, going into its 27^th year, over 400 veterans with disabilities spend an amazing week getting introduced to a variety of adaptive sports including skiing, sled hockey, scuba diving, cross country skiing and rock climbing.  Joining the veterans are their families and friends – the numbers easily add up to 1200 people or more customers for local businesses. The event happens during a slow, financially difficult time of the season; a time when businesses would normally be laying people off. Instead the event fills hotels, ski lifts, and brings in over one million dollars to businesses in the village.

Similar numbers are seen at the National Veterans Wheelchair Games—held in a different U.S. city each summer.  The summer games are twice the size of the Winter Sports clinic.  Hosting the summer games is a coveted honor for a city, not to mention the millions of dollars it brings to the businesses of the host city.

The Veterans Winter Sports Clinic and Summer Games are a good example of the consumer dollars a business with ADA access brings in—consumer dollars that non-accessible business leaves on the table.  According to the most recent census, nearly 20 percent of people in the United States have a disability. This number is quickly growing as the baby boom generation ages.  Not having access means one in five consumers cannot spend their dollars at a business; now add in family and friends of a person with a disability–logic and basic math dictates that businesses that are not fully accessible unknowingly lose out on 30 to 40 percent of potential consumer dollars.

The bottom line–ADA access is patriotic and profitable!  An accessible business shows support and respect for our troops.  Furthermore, ADA access is profitable–the question for businesses isn’t “Can you afford to become accessible?” the question is, “How can you afford NOT to be accessible?”

Resources

ADA National Network: www.adata.org.

Click on Regional Center on the lower left part of the page to find ADA Regional Center.

Californians For Disability Rights, Inc.: http://www.disabilityrights-cdr.org

Checklist for Readily Achievable Barrier Removal:  http://www.ada.gov/checkweb.htm

United States Access Board:  www.access-board.gov/

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Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

The month of May marked the final episode of  “House”, the TV show about a misanthropic medical genius who headed a team of diagnosticians. A theme of each episode was a medical mystery–the patient’s life hanging in the balance. The symptoms would mimic a malady or disease, tests would appear to confirm it, yet the treatment often wouldn’t work, sometimes it made matters worse until at the last moment Dr. House would notice a seemingly insignificant symptom or clue that would lead to a completely different and correct diagnosis, the cure was usually simple.

SCI (spinal cord injury) can often produce symptoms worthy of an episode of House.  Paralysis creates so many changes in the way a body works and reacts that it is paramount for those of us with SCI to learn what “normal” is for our body and to make note of any changes, like increase or change in spasticity or pain, and communicate these changes to the medical professionals that work with us to maintain our health.

At 52, I’m in my 27^th year as a T10 complete paraplegic and I recently went through a four-year long “House worthy” medical mystery of my own. At first the symptoms were subtle, I started feeling really run down and fatigued, something I chalked up to a combination of being in my late 40’s and a full-time dad.  Then I started getting a noticeable increase in neuropathic pain (a combination burning, pins and needles feeling) in my legs and an increase in spasticity.  I brought this up to my primary care physician and he did a complete blood workup and urinalysis—all of which came back normal.

Then I started getting patches of itchy scaly skin on my right hand, a dermatologist confirmed it was psoriasis, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001470/ ,  a condition caused by stress and or some type of inflammation, and she prescribed an anti-inflammatory cream.

The next symptom came on suddenly, severe neuropathic pain in my right abdomen at my injury level (at the belly button line)—it felt as if my pants were pulled up to my belly button and were scratching my skin.  The pain came on so suddenly I wrote the date in my “SCI journal.”  The area became extremely hypersensitive, and the neuropathic burning extended below the level of sensation on my abdomen.

Working in conjunction with my primary care and PM&R physicians, I tried everything from senna, a prescription laxative, to see if the pain was caused by constipation to various tests including an abdominal CT scan to rule out obvious (perhaps serious) problems and a spinal X-ray to check for disc problems, and scoliosis.  All came back negative—good news but no closer to an answer.

Three years went by. The symptoms remained with no answers.  Then I started writing a column on syrinxs (the formation of cysts on a spinal cord due to scar tissue from SCI) for my column Para/Medic http://www.newmobility.com/articleView.cfm?id=11770&srch=syrinx in New Mobility magazine. When I interviewed Dr. Scott Falci a Neurosurgeon at Craig Hospital in Denver, Colorado, an expert on the subject, a syrinx seemed to explain the onset of my spasticity and neuropathic pain.  If this was the case I was looking at two surgeries, a 6-hour surgery to remove my rods, and another extremely complex surgery to fix the syrinx.  Dr. Falci cautioned it is a serious surgery and is usually done if there is loss of sensation (sensation level moves higher).  I had kept a log of my sensation level from the day I was injured—thankfully it hadn’t changed.

Dr. Falci said the main way to diagnose a syrinx is a case history, and by ruling out all other possible causes for the symptoms, I had ruled out most of them. A complete urological workup was done and ruled out kidney and bladder stones as possible causes for the symptoms.

By now I had endured four years of unexplained pain and fatigue; symptoms that were putting my everyday life on hold and seemed to be caused some something related to my SCI, most likely a syrinx, something that would mean the possibility of two major surgeries and a long recovery.

A follow-up appointment with my primary care doctor uncovered a clue that led to a “House” moment.  Determined to help find an answer, my doctor ordered another blood panel, this time it showed I was anemic. I was referred to gastroenterologist for an endoscopy (small tube with a camera that goes through the mouth into the stomach and small intestine) and colonoscopy. The endoscopy revealed my small intestine was inflamed and had several tiny ulcers in it—a biopsy was taken from my small intestine and the results showed I had celiac disease http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION – a condition caused by a reaction to gluten, which is found in wheat, barley and rye.  To put it another way, I have gluten intolerance, meaning I’m allergic to wheat, barley and rye.  A blood test confirmed that I have a “very high” sensitivity to gluten.

When I first got the diagnosis I had to chuckle because I had made sport of the media coverage of stars ranging from Oprah to Victoria Beckham touting how they had switched to gluten-free diets.  When I would hear friends discussing the diet I say, “Oh boy, here we go again” and jokingly adopt a smug sounding voice and say “Excuse me waiter, is there wheat in this water? Because I’m gluten free!”  Oh the irony!

I started eating gluten-free over a month ago.  It was tough at first, especially when I realized that most beers are made out of wheat! When shopping I had to bring my reading glasses and a magnifying glass with me for the ingredient labels. Wow was it eye opening! It seems anything with more than three lines of ingredients has wheat in it, and a bunch of unpronounceable “additives” that probably aren’t healthy.

Perhaps this was nature’s way of telling me to get back to healthy (and tasty) eating.  In my athletic days (usually broke) I snacked on fruits, and cooked my meals lots of stir fry vegetables with just a bit of meat (inexpensive and healthy).  In the past decade or so I’d gotten into the habit of eating “toy food” (food that comes in a microwave or fast food wrapper), which probably isn’t good for me, and is adding a “spare tire” around my mid-section.

I’ve figured out the easiest way to shop gluten-free is to stick with fruit, vegetables, chicken and fish.  I’m also figuring out a “go to” list of gluten free staples and I’ve discovered a number of gluten free beers!  My favorite so far is Red Bridge by Anheuser-Busch.

And just like an ending to a “House” episode, it is working!  When I went gluten-free my symptoms slowly started to diminish, and within four weeks they were gone!  The neuropathic pain in my stomach and legs is gone, my leg spasticity has quieted down, the psoriasis on my hand is all but vanished and I seem to be getting my energy back.

The point of this isn’t to suggest everybody jump into being gluten-free, rather to offer one more tool in the myriad of possibilities when trying to solve problems associated with SCI.  I was lucky that one simple cause explained and got rid of so many symptoms.

When it comes to gluten sensitivity, literature suggests it is still a grey area that effects a small part of the population. WebMD research suggests that 5% to 6%–about 18-million Americans—have some degree of gluten sensitivity.  In various articles experts point out that although blood tests for gluten sensitivity have high degree of false negatives, if people are having symptoms that may be caused by gluten sensitivity (see resources) it is still a good idea to get a blood test. They further suggest that even if a blood test is negative, try a gluten-free diet for 2-4 weeks and see if symptoms improve.

As for me, I feel the diagnosis of celiac disease was like dodging a bullet—it has eased or eliminated severe symptoms and is giving me my energy back. I’m hopeful that avoiding toy food and getting back to a healthier eating pattern will also help me loose my “spare tire”.

Resources:

Celiac Disease; http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=symptoms

Gluten-Free Diet; =Gluten Allergy; http://www.webmd.com/allergies/guide/wheat-allergy

Gluten Sensitivity: Fact or Fad?; http://www.webmd.com/diet/news/20120220/gluten-sensitivity-fact-or-fad?page=2

Para/Medic, Syrinx and Pain;  http://www.newmobility.com/articleView.cfm?id=11770&srch=syrinx

Syrinx, “Untethering the Invisible Knot”, http://www.newmobility.com/articleView.cfm?id=11376&srch=Syrinx

Wheat allergy; http://www.webmd.com/allergies/guide/wheat-allergy

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Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

Monica Bascio will be representing the U.S. in handcycling time trial and road race events in the upcoming 2012 Paralympic Games in London that kicks off in six weeks. For Bascio, 42, handcycling in the Paralympics is the culmination of a 14-year journey of dedication and hard work. Bascio is a natural athlete and extremely competitive, however sports is just one aspect of her multi-faceted life—she is the proud mom of her 5-year-old son, Henry, dedicated wife with her husband, Ian, and an Occupational Therapist specializing in geriatrics.

Bascio became a T12 paraplegic in 1992 as a result of a skiing accident.  Following SCI rehab she pursued a degree in Occupational Therapy.  She got her first handcycle in 1997 as a way to stay fit and enjoy the outdoors with Ian, a former bike racer, and quickly developed a passion for the sport.

Bascio started handcycle racing in 1998 and was ranked the number one handcyclist in the world over the next five years, winning more that 30 handcycle races. In 2004 handcycling made its debut as a Paralympic sport in Athens, Greece, but unfortunately there was no women’s division–a huge disappointment for Bascio, who was arguably the top woman handcyclist at the time.

Undeterred, Bascio decided to try adaptive cross-country skiing (sit skiing). Once again her natural athletic ability, competitive nature and work ethic enabled her to quickly rise through the competitive ranks earning her a six-year run on the U.S. ski team where she represented the U.S. as a cross-country sit skier in the 2006 and 2010 Paralympic Winter Games.

In the off-season Bascio continued handcycling as a form of cross-training.

Bascio took much of 2007 off from competing in order to embark on a new adventure. On July 8 of that year, she gave birth to her son Henry and she and Ian proudly adapted to the world of parenthood.  By early 2008 Bascio was ready to start competing and the family created a balance of parenting, work and training that would enable Bascio to get back into ski racing.

Around the same time, Bascio’s dream of Paralympic handcycling seemed like it would come to fruition when it was announced that women’s handcycling would become an event at the 1998 summer Paralympics in Beijing.  Unfortunately in March she broke her tibia and fibula transferring out of a team van while at cross country race in Norway. Although her leg healed in time for her to compete in the Paralympic trials, she didn’t have enough time to get back into racing form and didn’t make the team.

After competing in the 2010 winter Paralympics in Vancouver, Bascio considered retiring from competition, but a rule change added an H3 class to the Paralympics. This meant she would be racing against athletes with similar function rather than an open class. Bascio quickly set her sights on the London Paralympics with the family agreeing to take it “One race at a time.”

Motherhood, family life, work and training at an elite level requires amazing balance and dedication. “On a typical day I’m up at 6:00am to put in a solid 3-hour workout on my handcycle. On some days it is a 4-hour workout.  In the meantime, Ian makes breakfast for Henry and gets him ready for the day.”  She says.  “By around 10:00am, I’m home. Ian heads to the office and I take over watching Henry and maintaining the housework.  We take turns making dinners.  Ian and I chuckle because most of our dinner conversation revolves around my training.”  Ian watches Henry on the days Bascio is working as an OT.  “The key to making it all work is we support each other, communicate and work together to balance the challenges of work, raising Henry and training for the Paralympics.”

Bascio says that although the family enjoys the hectic schedule, it can be draining.  “Ian cracks up because although I hardly ever watch TV, I love watching ‘The Biggest Looser’ (a show about weight-loss ‘boot camp’). She says. “I look at the show and think, ‘If all I had to do was stay at a campus and have a coach and do workouts all day it would be like a vacation!’”

Bascio says the other challenge in balancing family life with competition is the travel schedule. “My last trip in June was pretty crazy.  I was racing at a World Cup race in Italy for two weeks, flew back to the States, was home for two weeks, then flew to Spain to race in a World Cup race.” She says.

“Then I flew to London for 36 hours to ride the race course, then flew straight to the Nationals in Augusta, GA, and of course the plane was delayed so I didn’t get in until about 9:00pm and met Ian and Henry and Henry hadn’t seen me in so long and wanted to go swimming at the pool at the hotel, and I still had to put my bike together—then had a race the next day.”

Bascio has been an avid ROHO user for the past 15 years.  “I love ROHOs” says Bascio. “When I was first injured 20 years ago, the equipment vendor I had in rehab had the ‘old school’ mentality that a ROHO cushion was for people with higher level injuries or people that already had problems with skin breakdown so they ordered a gel cushion. I didn’t like it because it was heavy and I didn’t want to take the time to massage the gel the way I was supposed to.  When it was time to order my next cushion I switched to a ROHO and I’ve been using them ever since.”

As an OT and an athlete, Bascio is aware of how quickly a pressure ulcer can happen. “I know wheelchair users that have had pressure ulcers and I’ve seen what they go through and the great length of time it takes to heal.  I’m not willing to take that risk.” she says. “When I broke my leg it cost me a spot on the Paralympics and a pressure ulcer can take much longer to heal.  I’m always sitting on a ROHO.  I use a ROHO QUADTRO SELECT LOW PROFILE on my chair and I sit on a LTV ROHO Seat Cushion in the car.  I keep an ADAPTOR Pad in my backpack for travel and use it in the tub or shower bench, or when I’m sitting on the side of a pool or sitting on the ground working on my bike.  And of course I sit on my QUADTRO SELECT on long plane flights.”

Ian and Henry, along with other members of Bascio’s family will be in London to cheer for Bascio.  “Henry gets to travel to a lot of competitions.  He has become a member of the handcycling community.  Everybody knows him and a lot of the other athletes have kids so he has friends to play with. He has his own frequent flyer card and is already on his 2^nd passport.”

Says Bascio.  Proof of the saying, “The family that plays together, stays together.”race.

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Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

There was a huge amount of press coverage leading up to the June 4 debut of Push Girls–a 14-episode reality TV show about the lives of four women with SCI (spinal cord injuries) airing on The Sundance Channel, Monday evenings at 10:00pm—including an in-depth cover story in New Mobility magazine.

Like it or not, media plays a huge impact on the way in which people view the world, and all too often wheelchair users are portrayed as two dimensional characters in film or on TV–usually falling into stereotypes of “heroic inspiration”, “bitter victim”, “evil villain” or in the case of “Artie” on the TV show Glee—a caricature.

My background includes a BA in broadcasting, with an emphasis on television production. I don’t get the Sundance channel, so I’ve popped for the $2.99 per episode on iTunes to view the five episodes that have aired to date and critically viewed them, pausing to take notes, and replaying to look for flaws—I’ve been pleasantly surprised and entertained.

The reality of reality TV is that an editor can only fit so much into a 25-minute show, including  bringing it to some type of conclusion.  The show is done well, starting with camera angles that are set at the women’s eye level or below (wheelchair height—rather than shooting from standing height looking down).  This is a big deal as it portrays the women as strong and powerful.

The show does a good job blending day to day issues like paying bills, dating and relationships, with SCI issues like transferring into the shower, using a standing frame to help keep bones strong, transferring a chair into and out of the car and answering questions that wheelchair users hear all too often like “can you have sex?”. I love Tiphany’s answer “Yes, lots and lots of sex.” By the way, that question isn’t always unwelcome, in fact it is quite inviting when asked by a person you find attractive!

The five episodes thus far have covered a lot of ground, from a ball room dance competition—with Auti showing very cool dance moves, both individual and  with her partner–break-ups, speed dating, to Auti and her husband going to a fertility specialist as she tries to have a child at 42—yes, women with SCI can and do have children.

The key to the show is the power of friendship–the four women support each other, have each other’s backs and provide honest feedback to one another.  It is also cool to see the way they help mentor a 5^th Push Girl, Chelsie, who is still learning the ropes as she approaches her 2^nd year as a para.

When it comes to media portraying people with SCI, my biggest pet peeves are two all-too-common “sensationalized” and incorrect headline themes “Not being able to walk and using a wheelchair is terrible, the end of the world.” and “A person with SCI can walk again if they have the willpower and work hard enough.”  The “Walking again” headlines fail to mention that the a person that is finally able to walk had an incomplete injury, meaning there still is still some sensation and/or voluntary movement below the injury and that sometimes people continue to get more functional return over time. With enough return,  intensive therapy and hard work can enable a person to walk. But in a person with a complete injury—meaning there is no sensation or movement below the level of injury—all the willpower and hard work in the world isn’t going to create more muscle movement, much less result in walking.  By neglecting to report this information, the general public is left with the idea that “If you aren’t walking, it’s because you don’t have the willpower and aren’t trying hard enough”.

The impact of these stories becomes evident in episode 3 “You Don’t Get It” when Mia (at 32, has been a para since age 14 when a blood vessel ruptured in her spinal cord) is visited by her mom for the first time in 3 years.  Her mom is a recovering alcoholic and the two have had a difficult relationship.  At the beginning of the show, Mia’s mom says “When I heard that Mia may not walk again I just wished she’d die because I didn’t know what her life was going to be like.”

When Mia opens the door for her mom, one of the first things her mom says, in a disappointed voice  “You mean you’re not walking yet?” We see Mia’s uncomfortable look of disbelief (she has been injured 18 years).  Next Mia gets into her standing frame and her mom says “Can you still move your toe? Did you get any other movement back?” Mia responds flatly “I can move two toes.”  Then her mom says, “I would think that Mia would want to walk if she could but it’s like that is all closed off to her.”  Insinuating that Mia isn’t trying. She starts telling Mia she keep reading about the progress they are making in SCI research.  We see Mia say “My mom has this misconception that if you can’t be walking then there is no possible way you can be happy or live a fulfilling life.  So I need to show her that I am living a fulfilling life.”

Throughout the episode there is difficult discussion back and forth—Mia brings up how difficult her mom’s alcoholism was on her.  Strain is evident in Mia’s face as different issues are brought up.

Mia takes her mom on a day of errands and shopping—at one point Mia does one of the coolest up-a-set-of-two stair transfers (going from her chair, up to a patio chair then back to her wheelchair) I’ve seen–to show her that she is leading a fulfilling life.  While this is going on we see the other women buying a cake and getting ready for Angela’s 10^th “Celebration of Life” (celebrating 10-years since her accident) party.  Later Mia and her mom join the other Push Girls for lunch, as Mia’s mom meets the women for the first time she says “As I walked into the restaurant I was amazed at how glamorous her friends were.”  By the end of lunch it appears that for the first time Mia’s mom gets the big picture and lets go of focusing on the wheelchair.  Mia says “The girls had an amazing effect on my mom, I could see it. I could feel her energy change, like a sense of relief.  It was amazing progress to make with my mom in one trip.”

As I write this I am anticipating tomorrow nights episode, which says “takes on one of the most controversial topics of our times” and will feature Chelsie’s continued pursuit of dreams of walking.  Trailers show Chelsie doing physical training at a SCI clinic designed to help maximize functional ability. And she is considering stem cell treatments, which are only done in other countries, are extremely expensive and scientifically unproven.  For an in depth story on stem cell treatments see New Mobility magazine.  It will be interesting to see how the episode plays out.

As the show progresses, I hope we learn more about how the women make ends meet.  Thus far, we have seen Mia in her job at a graphic design and branding firm and Angela is trying to re-start her modeling career.

It is apparent from the comments on the Push Girls website, they are connecting with fans.  I hope the show continues to grow in popularity and gets picked up for another season.  Perhaps a spin-off, Push Guys?

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Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

In my pre-SCI (spinal cord injury) days I competed on the professional freestyle snow skiing circuit. Vying for the upper echelon of the sport, I soon discovered the difference between top athletes is as much mental as it is physical. I also had a few hurdles to overcome, not the least of which was that I would be overcome with severe anxiety before the start of a competitive run. I worked with a sports psychologist, and one of the tools she taught to help me overcome this was cognitive restructuring, a technique in which you change negative self talk and turn it into positive self-talk. A technique that worked! After much practice, I was able to convince myself the more nervous I was, the better I would ski. I welcomed the nerves – the tougher the competition, the better I skied.

When I broke my back and was going through SCI rehab, I discovered cognitive restructuring could be a very helpful tool in dealing with the daily routine and rigors required to maintain a healthy body with SCI.

During the acute phase of my SCI, I got hit with a pulmonary embolism (blood clot in the lung). As part of the therapy for the embolism, I had to operate a device that consisted of inhaling through my mouth to keep a little ball raised in a tube as long as I could—long deep breaths—five times every hour, which the time seemed like torture. Even tougher, twice a day the respiratory therapist came in with a torturous machine that with each breath, by mouth, would force saline-misty air into my lungs as I inhaled.  The forced salty air had a horrible taste and would cause me to almost puke. I dreaded every treatment.  However, I also understood the treatments were vital to helping me open and strengthen my lungs to prevent pneumonia.

As awful as the breathing machine felt—there was also something vaguely familiar about it.  Then I figured out the connection—the saline mist was coming from the machine had a similar taste as ocean water, a taste I often encountered when I was scuba diving – a sport I loved!  I used this connection to cognitively restructure my thoughts about the breathing treatments.  Each time I struggled to keep the ball raised on my breathing device I would imagine I was floating on the surface of the water looking down through my dive mask and taking a deep breath on my snorkel before descending as deep as my breath would allow.  During the forced air treatments, I would close my eyes and imagine I was diving in crystal clear water near a colorful coral reef.  Using cognitive restructuring, the previously unbearable treatments became pleasant daydreams.

Transferring from the acute SCI bed to the rehab ward and trying to learn the endless list of daily tasks from when to empty the bladder, how much liquid to take in, bowel training, weight shifts, skin checks, and on and on, with no physical sensation to remind us was daunting to say the least.

I remember having a similar, overwhelming feeling during my first scuba classes thinking of all the things a diver needs to monitor during a dive – depth, amount of air pressure in the tank, length of the dive, decompression status, navigation, buoyancy control, planning a slow controlled ascent and safety stop – seemed just as daunting and there is no physical sensation to help out.  Yet with time and practice it became second nature.  An accomplished diver consistently checks these systems in a relaxed manner and it becomes a source of pride.

Once again, I turned to cognitive restructuring. In rehab, I decided learning how to keep track of the way my body works and learning to manage and monitor all of the systems I could no longer feel, including weight shifts and skin checks would become akin to checking systems in scuba diving.  I worked hard in rehab and got the basics down.  I’ve also found that learning how to keep a body with SCI healthy is a lifelong, ongoing process.  I’m fortunate to have many friends with SCI and we often trade “SCI health and maintenance” ideas. For the friends I roll with, monitoring and taking control of the unique ways our bodies work with SCI is second nature.  We trade stories about keeping ourselves healthy, and dodging (or getting hit with) skin, bladder or shoulder problems the way divers talk about their scuba expeditions.

My cognitive restructuring comparing scuba diving to life with SCI extends to my equipment as well. I take as much pride in my chair and cushion as I do in my scuba gear.  I keep my chair clean and in perfect condition.  Same goes for my ROHO^® QUADTRO SELECT^® Cushion. As I’ve mentioned in previous blogs, I wash and change my cushion cover every few days and every week or two I take my cushion into the tub and wash it with bath soap and give it a good rinse to make sure my equipment doesn’t acquire odors that I may not be aware of.  For more information on cushion cleaning, see Resources.

 As I’ve also mentioned in previous blogs, people do notice when you take pride in your health and your equipment. The woman I married said one of the things she noticed about me when we first started dating was that I kept my chair clean. She also noticed that I did weight shifts—granted she was a nurse.  To her, taking care of my body and my equipment is a sign of self-confidence and comfort with my disability. She found this attractive!

Stay healthy, my friends!

Resources:

Cleaning and Disinfecting ROHO DRY FLOATATION Products

How to Keep Your Equipment Clean

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Bob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.