Transfers, Travel Tips and Bladder Management On A Crowded Flight

I’ve always enjoyed traveling. One of my favorite movies is the 2009 comedy-drama “Up in the Air.” I easily identify with the main character, Ryan Bingham, played by George Clooney. Bingham, who loves his job although it requires him to fly around the country, has a goal of accumulating 10 million frequent flyer miles, putting him in lofty company, indeed.  In the late 80’s through the 90’s, I had a job where I found myself on a different flight four or more times a week, and I loved it.  While Clooney’s character briskly walked through airports, I, as a T10 complete para, was much quicker wheeling through airports. Domestically, I flew around the country from Maine to Alaska. My international assignments took me from Europe to Mexico and Central America.

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.

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.

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.

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.

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.

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!

 

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

Is It Time To Replace Your Cushion?

Guest blog post by Bob Vogel

“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!

 

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Will 90210 TV Show’s Riley Be Hospitalized With A Pressure Ulcer?

Guest blog post by Bob Vogel

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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How To Go About Getting the Proper Back Support

Guest blog post by Bob Vogel

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!

 

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The Importance of Back Support in Overall Health With SCI

Guest blog post by Bob Vogel

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