Push Girls—So Far, So Good!

Guest blog post by Bob Vogel

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?

___________________________________________

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.

SCI, Scuba Diving and the Art of Cognitive Restructuring

Guest blog post by Bob Vogel

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

___________________________________________

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 Results Are In…

• CMS has moved forward with the round 1 competitive bidding “rebid” in nine metropolitan areas (Charlotte, Cincinnati, Dallas-Fort Worth, Kansas City, Miami-Fort Lauderdale, Orlando, Pittsburgh and Riverside-San Bernardino).

• There were nine product categories put up for bid:

1. Oxygen, Oxygen Equipment and Supplies
2. Standard Power Wheelchairs, Scooters, and Related Accessories
3. Complex Rehabilitative Power Wheelchairs and Related Accessories (Group 2 only)
4. Mail-Order Diabetic Supplies
5. Enteral Nutrients, Equipment and Supplies
6. Continuous Positive Airway Pressure (CPAP) Devices, Respiratory Assist Devices (RADs), and Related Supplies and Accessories
7. Hospital Beds and Related Accessories
8. Walkers and Related Accessories
9. Group 2 Support Surfaces (Miami-Ft. Lauderdale only)

• Unfortunately, despite all our efforts and rationale, adjustable seat cushions (HCPCS codes K0734-K0737) were still included in the rebid as an accessory for standard power and complex rehab power.

• On July 1^st CMS (Medicare) announced the winning bid rate for each code in each of the nine metropolitan areas.  Currently, the Medicare allowable for “K0734 – adjustable skin protection seat cushion for wheelchair” (this is the code that the ROHO Single Valve HIGH PROFILE is assigned to, along with a wide variety of other products) is $299.98 when used with a power wheelchair.  Yet, the winning bid rates for adjustable seating varied by over 24% from one metropolitan area to another (from $225.00 in Miami to $293.98 Cincinnati).  Based on the winning bid rates I believe it is going to be very difficult, if not impossible, to obtain a high quality, adjustable cushion as of January 2011 in Dallas, Ft. Worth, Miami, Ft. Lauderdale or Orlando.

• In addition, since 2004 when the new seating policy was implemented by Medicare we’ve already seen the reimbursement for adjustable seating cut by over 20%.  As such, it’s not going to be easy to obtain a quality product, let alone the accompanying services, in any of the competitive bidding areas.   (Why we continue to see cuts in the reimbursement for products intended to reduce the incidence of skin breakdown, when the cost to heal a wound can cost thousands to tens of thousands of dollars, is beyond my understanding.)

• We are continuing to try and get adjustable seating pulled out of round 1 of competitive bidding but the chances of this occurring is becoming less and less likely.  I really believe that “deep down” the folks we’ve met with probably agree with our arguments; however, I also believe they are unwilling to pull adjustable seating out of round 1 because they are afraid that this will create a precedent and create an uproar from other products included in bidding.  Yet, I’m not willing to say that all our efforts are in vain and we will continue to fight for their removal from round one.  In addition, as much as I hate to see what has occurred in these nine metropolitan areas, I do believe that our messages and the round one results may help us to avoid adjustable seating being included in round two, which includes 91 of the largest metropolitan areas in the U.S. (including New York, Los Angeles and Chicago).

• We will continued to argue that the competitive bidding of adjustable skin protection seat cushions:

• Will not maintain, let alone enhance, beneficiary access to the goods and services they need.
  • Choice is critically important to address the unique need of each individual requiring skin protecting seat cushions.  No one product meets everyone’s needs.  As such, there are over 4000 products of unique sizes, shapes, materials, configurations, functions and acquisition costs collectively assigned to the four adjustable skin protection seat cushion codes.
  • Service is essential to effectively select the appropriate product and insure that the product is correctly adjusted to the individual.
  • These two variables cannot be effectively addressed under the existing competitive bidding framework.  To win a provider must be one of the lowest bidders.  This incents the provider to submit bids based on the products that cost them the least to obtain without consideration for the needs and variables described in point 1 above.  Further, there are no service requirements included in competitive bidding.  This incents the provider to reduce or eliminate any services they possibly can in order to lower their bid.

• Will result in an increase in incidence and prevalence of wounds and the other medical complications associated with wounds. Recently, the results of a randomized controlled trial performed by the University of Pittsburgh have started to be announced.  This is a landmark study for skin protection seating including multiple facilities and over 200 participants.  In the study four different seat cushions, all claiming some skin protecting features, were used.  While not all of the data has yet to be fully analyzed and reported, the information presented so far already re-enforces our position.  During the study there were nineteen incidences of ulcers on the sacrum / coccyx.  For three of the included cushions the incidence of sacrum / coccyx ulcers ranged from fourteen to twenty percent.  However, there were no sacrum / coccyx ulcers for the individuals utilizing the ROHO cushion that was included in the study.  While we are very pleased with how the ROHO served the individuals utilizing it during this study it is not my intent to claim that ROHO cushions are the only effective product.  This is certainly not the case.  I merely point this out to illustrate the need to select the right cushion to address the individual’s needs and the impact on wound incidence if this does not occur.

• Will increase overall expenditures for Medicare beneficiaries and the Medicare system.

• If the competitive bidding of adjustable seating results in an increase in the incidence of wounds any gross savings derived from their being included in competitive bidding will be overwhelmed by the cost associated with treating those wound.  It is not an exaggeration to say that the prevention of one wound can pay for over one hundred skin protection seat cushions.
• Regarding the costs for beneficiaries, the competitive bidding of adjustable skin protection seat cushions may force them to make a choice between increasing their risk of skin breakdown and purchasing the cushion they need privately.  Either way their out of pocket costs go up.  Beneficiaries are already finding it more and more difficult to find a provider willing to take assignment on an adjustable skin protection seat cushion.  In many cases they are being forced to purchase the product privately, or purchase the product from a provider on a non-assigned basis.  Under the existing fee-for-service structure the beneficiary can at least recoup 80% of the Medicare allowable for the product they purchase.  However, under competitive bidding they lose this right.  They must obtain a cushion from a winning provider who accepts assignment in order to obtain any reimbursement from Medicare.  If they cannot get the product they need from a winning bidder they must choose to take what they can get or pay 100% of the cost to get what they need.

• Our message remains the same:
  • It is not too late to pull adjustable seating out of round one of competitive bidding (K0734-K0737)!
  • It is imperative that this occur to insure beneficiary access to the goods and services that they need and to avoid serious medical complications for these beneficiaries, including an increase in the incidence of skin breakdown!
  • Do not compound this mistake by including adjustable seating in round two of competitive bidding!

If you’re interested in helping in this fight please contact your Senators and Representative and share your concerns and our message.  Please feel free to use any of the information in this update in developing your own message.

Once again, thank you all for your ongoing interest and support.  I’ll keep you posted!

Dave

My Favorite Holiday, St. Patrick’s Day!

Today is my favorite, most important holiday of the year, St. Patrick’s Day!  So what am I doing to celebrate this High Holy Day for the Irish?  Well, I’m in Baltimore at CMS attending a PAOC meeting on the DMEPOS competitive bidding program (wow, 3 acronyms in one sentence).  To make sure that I don’t lose anyone let me add a few clarifications, CMS stands for the Centers for Medicare and Medicaid Services, PAOC stands for the Program Advisory and Oversight Committee, and DMEPOS stands for Durable Medical Equipment, Prosthetics, Orthotics and Supplies.  In case you haven’t already figured it out, this is not what I really wanted to do today!  My plan for the day was to attend an Irish Parade, sing Irish ballads, eat corned beef or Irish stew and consume my fair share of Guinness.  None of this has occurred so far… but the day’s not over yet!

What makes this all the more frustrating is that this oversight doesn’t seem cause any distress for the organizers or many of the attendees at this meeting!  Personally, I think that this is an obvious example of discrimination against older, weight challenged, guys of Irish ancestry (or those which claim such ancestry once per year).  Prior to the meeting, I was talking with an Irish colleague of mine who also had to scrap his plans in order to attend.  It was easy to pick us out because we were the ones wearing the most green (and we were probably the only two guys in the room wearing Irish Claddagh rings).  We both wondered whether there would have been any consideration given to the date of this meeting had it conflicted with any of the major holidays of other ethnic groups?

I even offered a compromise that I thought would address everyone’s wishes and probably result in one of the most effective meetings in history.  I suggested that the meeting adjourn to a pub and reconvene there.  I even offered to buy the first round, and had colleagues that agreed to take care of the next several rounds.  Between the casual setting, and the wonderful elixir we’d all be sharing, I have to believe that we’d have all been great friends by the end of the day and solved all of the problems regarding DME, Medicare and Health Care in America.  All we’d have needed is to have one “designated note taker” (like a designated driver) to jot down all our great ideas… cause the rest of us won’t have the foggiest idea what was discussed when we get up tomorrow.  For some reason, my suggestion wasn’t even taken seriously…

One last note on today’s meeting.  When you come to CMS you have to wear a peek-and-stick name tag that indicates you’re a CMS visitor.  I’ve been to CMS several times and had the opportunity to wear these stickers each and every time.  Every time I’ve gotten to wear this sticker the adhesive lasted about 5 minutes before the tag fell off.  Today this made me wonder… was this sticker put out for a competitive bid and was the bid winner the lowest cost provider?

Happy St. Patrick’s Day!

Dave

Introducing Live ROHO

Are you looking for a space where you can share your personal stories with others? A community where you can celebrate the amazing life you lead? Somewhere you can find inspiring pictures, resources and more? Then join us at Live ROHO, the new social community created just for you, the ROHO user!

The ROHO Group has launched our brand new community style website, Live ROHO, for users to share their own stories and experiences with others. Here you can submit your own stories, upload pictures and more. Live ROHO is meant to serve as an environment that encourages sharing, learning and inspiration!

The ROHO Elite Sponsorship Program will be included on Live ROHO as well, complete with current ROHO Elites, their stories, pictures, etc. The ROHO Elite consists of individuals from a variety of backgrounds and professions – including athletes, teachers, community leaders and parents. In exchange for their service to the ROHO community, each member receives free ROHO products and may be featured on our website. At Live ROHO, you will have the chance to apply for ROHO Elite status and see the benefits of being an Elite member.

Now that you have found a place that you can celebrate your life, start living. Live ROHO!

• Post your story

• Upload images

• Submit a video  to marketing@therohogroup.com

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