Lucky Break: A Love Story

“Lucky Break: A Love Story” by Belinda Ann Begley is a captivating true story about how Begley met, fell in love, and shared an amazing life with the late Kirk Kilgour, a C4 complete quadriplegic – the result of an accident while training with the Italian National Volleyball Team in 1976 (at age 28) – with no movement below the shoulders.

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”

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

The Most Politically Powerful Paraplegic on the Planet

Ecuador is known as a biological diverse paradise: From active volcanoes and the Andean highlands, to the Amazon rainforest and the Galapagos Islands. But paradise for Ecuadorians with disabilities? Not so much.  Until recently it was rare to see wheelchair users out in public. People with severe disabilities were treated as outcasts and hidden from society. In rural areas, some were confined to sheds and chicken coops.

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.
Read more

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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Protecting Your Skin While Staying With Family and Friends

Guest blog post by Bob Vogel

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!

 

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