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10 Easy Ways To Make Your Wheelchair More Comfortable

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The human body wasn’t meant to sit in a wheelchair all day, which must explain why it took so long for the wheelchair to finally get comfortable. Thank God for the 20th century and the invention of rubber, plastic, poly-stretch, electricity and everything else; rocketing the wheelchair into the echelon of comfort.

It still takes a keen eye however to make the wheelchair perfectly comfortable despite all of these advances that are now standard on a wheelchair. Slight adjustments make a huge difference, as well as accessories you didn’t even know existed. The thing about using a wheelchair fulltime is that it must be comfortable. You just can’t accept anything less.

And it’s up to you to make the effort. Check out 10 easy ways to bring your wheelchair into the land of comfort, and never again complain about an achey back.

1) Try a ROHO Cushion

One of the first places to start with making your wheelchair comfortable is the cushion.  There are dozens of cushion options available, but one of the best is the ROHO cushion.  Made up of dozens of inflated nodules that create a pillowy effect under your bum, the ROHO cushion is one of the most popular wheelchair cushions because it feels amazing and works for most wheelchair-users.

roho-cushion

They have their high profile and low profile series (the nodules are either higher or lower) and most insurance companies will cover it because it’s also really good at preventing skin breakdown. Make sure you try both the high and low profile before committing to one.

2) Lumbar Support

Your lumbar area can make or break your comfort level in your wheelchair; the little space in the lower part of your back where it curves inward. If it doesn’t get proper support, your entire back will feel like giving out all day. You can use a small rolled up towel or an actual lumbar support seat attachment depending on how much you want to spend.

Just know that it can make a world of difference if you decide to try. A friend of mine who’s been a quadriplegic for five years recently put a lumbar support in his wheelchair for the first time ever and was astounded how something so small could improve his comfort level so much.

3) Cushioned Arm Rests

Why have hard plastic armrests if you don’t need to silly goose? If your wheelchair has armrests, an easy way to improve your wheelchairs comfort level is to make sure they’re cushioned. That little extra cushion can feel amazing when you’re in a wheelchair all day, especially if you also use them to transfer or to re-position yourself during the day.

4) Adjust Your Footrest

The footrest on your chair can have a huge impact on your comfort level too. They key is to make sure your knees are slightly higher than your hips. If they’re too high, your poor booty gets crammed into the back corner of your seat, and believe me when I say it can wreak havoc on the back. Hopefully your footrests are adjustable. If not, bring your chair into a wheelchair repair shop to force the adjustment. Nothing is impossible.

5) Cross Your Legs

Sometimes a simple body movement can make all the difference and most wheelchair-users agree crossing your legs is one of the most effective ways to relieve back pain when sitting. It’s the redirection of the pressure of your body on your lower back that helps. However, when crossing your legs, make sure to switch the legs every couple of hours so you don’t get any pressure sores.

6) Try a Jay Backrest

Trying a different backrest is a great way to get more comfortable in your chair and one of the most popular backrests among wheelchair-users are Jay backrests. Made of a soft foam cushion, Jay backrests curve to your back. The longer you sit against a Jay backrest, the more it feels like it was custom-made.

7) Lateral Side Supports

If you have bad torso control and therefore have balance issues, lateral side supports are a great accessory to add to your wheelchair. Think of these as tiny ping pong paddles that jut out on the sides of your backrest, helping support you if you lean too far to the right or left.  These supports can be indispensable when doing more arduous tasks, keeping your balance so you don’t have to struggle.

8) Avoid Bulky Clothing

A big no-no when sitting in a wheelchair all day is wearing big, bulky clothing. Giant wool sweaters with belts that tie in the back, oversized hoods that hang too low, even extra thick coats or shirts; having too much fabric on or behind you can really through off your balance and comfort when sitting in a wheelchair. If you are generally cold, your best bet is to try to find warm clothing made of thin fabric.

9) Recline the Backrest a Few Degrees

Another thing you can do that lands in the “slight adjustment” category is to recline your backrest a few degrees to get more comfortable. Sitting too straight in your wheelchair can make you lean too far forward and have to fight to keep your balance all day. By simply bringing back the backrest a few degrees, you will notice a huge difference.

10) Custom Seating

If all else fails and you still can’t get comfortable in your wheelchair, consider custom seating. It may seem like a drastic step, but I’ve been using custom seating for nearly nine years and would never have in any other way. The clinicians use pressure mapping to create your seat and backrest to make it perfect for your body, widdling the foam away until it’s just right. Most clinics and hospitals in major cities offer this.

Whatever you do, never think it’s a lost cause getting more comfortable in your wheelchair.  It may seem like a hassle, but if you’re able to find that one adjustment that can make all the difference, you’ll be thanking your lucky stars you gave getting comfortable a serious effort. When you’re completely comfortable and pain-free in your wheelchair, anything is possible.

What adjustments to your wheelchair have made all difference?

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Photo courtesy of Flickr CC

The 12 Super Human Powers Of Every Special Needs Parent

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I’m the parent of a child who has special needs–what’s your super power?

We may not be able to leap tall buildings in a single bound, fly faster than a speed bullet, or have x-ray vision, but trust me, parents of kiddos who have special needs have some pretty amazing super powers. While we are living day to day, making sure our kid’s needs are met and trying to get through the day with our sanity more or less intact, we might not take the time to recognize how super we really are. So here is a list of some superpowers that special needs parents use on a regular basis without a moments notice of how awesome they are!

We might not all have all of these super powers… and they might not all be at full strength all the time (for instance, whining is like kryptonite to my other super powered patience).  But overall, I would say we are a super group of parents.  So what makes parents of children with special needs so super?

1) Super Human Strength

The strength to fireman carry a 5-year-old who is kicking, screaming and flailing while pushing the baby in a stroller out of the zoo is beyond normal human strength! But physical strength is only part of the super human strength possessed by parents of children who have special needs.  The internal fortitude to wake up every morning, smile and manage whatever chaos the day throws at us, often requires strength that is beyond that of typical humans!

2) Super Speed

My son who has a bleeding disorder once cut his finger pretty badly on a broken glass, he came out to show me and in the moment it took me to realize it was bad, my cupped hands were filled with blood. It was at this point that my super speed kicked in.  I grabbed some gauze, wrapped it in a super tight pressure bandage, gathered up his factor and supplies, mixed meds, popped an IV and infused his factor faster than you could say, “all that blood is making me woozy.” We were on the way to the emergency clinic in less than 10 minutes from broken glass to getting both kids dressed, out the door and into our car. That’s super speed without a doubt (trust me, on a good day it takes at least an hour to get both kids out the door and that’s without having to start an IV).  When the situation calls for it, super speed is in our wheelhouse!

3) Invisibility

I’m not sure exactly how this works but it seems that when people are playing Minecraft I am invisible.  Strange but true!

4) Mind Reading

While I may not be able to read most people’s minds, I am pretty good at reading my children’s minds.  More often than not, I know when a tantrum is brewing before there is any outward sign.  I know when they aren’t feeling well, or when something is just off.  It’s like mom intuition, but more super.

5) Super Human Endurance

Well this one is a no brainer, if you’ve ever sat through a marathon six hour day of appointments at the Children’s Hospital with nothing to entertain your 2-year-old besides the random junk in your purse (because you were told this one would be a quick appointment, and you were still naïve enough to believe it back then) then you used your super human endurance.

6) Super Knowledge

How many of you have had to educate professionals about your children’s diagnoses or challenges?  If I had to guess I would say it is a regular occurrence for most parents of children with extra challenges that we are teaching the doctors about our kid’s needs.  I realized years ago that my husband and I are the only experts on our son, he has many amazing and talented specialists and they are all true experts in their specialty areas.  However, it’s our job to put it all together and understand how all of these conditions interact within the actual human being that is our son.  Before my son was diagnosed I had never heard of Von Willebrand’s Disease, now I know more about it than most doctors (outside of the amazing docs that specialize in hematology of course).  We may not be medical doctors or nurses, but when it comes to our kids, we’re in the know.

7) Super Hearing

When someone is hurt, when kids are fighting, and worst of all, when things are too quiet, my super hearing abilities kick in.  Children whispering in the backseat, yep, I can hear that too!

8) Super Human Voice Projection

And when that super hearing has told me that something’s not right, I use my super voice projection.  I don’t like to yell at my kids, but there are times when it’s simply not an option not to.  When something dangerous is about to occur, then you better believe that if I can see them, they can hear me!  I had  no idea I could project my voice so far before having kids.

9) Time Travel

I am pretty sure I must have perfected the art of time travel, since I regularly have to squeeze 30 hours of stuff into a 24 hour day.  I know I am not alone in this, most parents of differently abled children seem to have more to do in a day than hours and somehow we pull it off.  I am not sure if we are manipulating the time space continuum somehow? Or maybe we’re duplicating ourselves and our clone’s are running some of our errands?  Regardless, whether it’s time manipulation, time travel or duplication, this is clearly a super power in some way or another.

10) Super Stretch

Parents of kiddos who have special needs have two ways in which we can use our super stretch abilities. First of all, we are pretty much constantly being pulled in at least 10 different directions with multiple people and tasks requiring our attention at any given moment. It requires a whole lot of stretching to manage being pulled in so many ways at once, but we make it work.

We are also required to be super flexible in another way, when the specialist cancels an appointment at the last minute and we have to juggle work and school plans to make the new appointment work, when an emergency comes up two weeks before Christmas and all travel plans have to be cancelled at the last minute, we are using an incredible amount of flexibility.

11) Super Linguistical Powers

No I don’t mean that you should try to speak to me in a foreign tongue, because I guarantee I will not understand you. But I have this uncanny ability to pick out what children are saying, even when they have pretty severe language difficulties.  I like to joke that this is my super power and I am often used to translate for kiddos when others cannot make out what they are trying to say.  I suspect this came from years of decoding my son’s unusual speech patterns, like being bit by a radioactive spider (kind of) my brain was reshaped by interacting with my son’s strange language as a toddler/preschooler and here I am, with my super linguistic powers.

12) Super Positivity

This is a superpower that many parents of children who have special needs seem to have. We tend to be glass half-full kinds of people. We are often able to see the silver lining, the positives that exist despite the challenges. We are grateful for our children, and we are keenly aware of the possibility of losing a child. We are grateful for what they can do, and simply grateful to have them with us in this world. It’s not always easy to find the good in a difficult situation, for some people it’s virtually impossible. So I definitely think this is a superpower for many parents of children have special needs.

I hope that this list has helped you realize some of your super powers.  What other super powers do you have?

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My Messy Beautiful: Wedding Bliss, Then Paralysis

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We all have stories.

Some are good. And some are like really friggin’  good. Upon hearing them: BAM! Instant hero. How’d she live to tell?  Ford Tough. Or something.  It’s not rare to hear a story that has me feeling grateful for our thing that happened.

And these storytelling heroes?  I feel what they’re telling me. I physically feel with all my parts how they feel even though my story is different.  I hurt on the inside for people making their way through a traumatic event.  My soul gets scared.  It’s familiar territory.  The stories are different. The way your inside crumbles and tries to repair – it’s the same.

May I tell you about my story? Here is a version.

It includes:

1)      Jagemeister

2)      A cute guy

3)      New Years Eve

4)      More  Jagemeister

5)      Spin the bottle (yes, with grown-ass adults. See #1 and #4)

Yeah, so, liquid courage or whatever it is. Our seven year relationship has a liquidy foundation made of licorice-tasting liquor.

Five years of dating, a beach house proposal, a golf course wedding, a new city, new jobs, and a massive course-changer.  My husband and I have been through hell and back together. He’s now, for sure, my forever person.

Jimmy and I don’t have kids yet. What we do have? A spinal cord injury.  Less than two months after we were married, Jimmy was on his way to work when The Flying Tire came barreling down the highway – changing our quiet, normal lives.

Just like that, my husband was paralyzed. August 8, 2011. That was the last time he walked. Those steps to get into his work car, those were his last. That morning spent at home with coffee, preparing for work – it would be the last like that.  We had no idea of the new path we faced but we were slowly pulled into reality one day at a time. It was tough stuff, man.  What humans are expected to deal with sometimes – it’s just mean.

Our lives look different now.  We used to both work in television news.  Jimmy was a photographer, I was a producer.  We actually worked together at the same station, on the same shift, on the same show when the injury happened.

Now we both work together on the injury.  Our lives are dealing with home care nurses and case managers. Catheters and bowels. Wheelchairs and ramps.  Ventilators and suctioning. Oxygen saturation and temperature. Skin breakdown and muscle spasms.  Medical supplies and medication.

Being through a trauma shakes your core a little, doesn’t it? It changes your perspective.

Some of the pettiness is exhausting now. On the same token, sometimes it’s the little things we’re thankful for because look how close my husband came to not having pettiness and little things.

Perspective.

While it can seem like me and my husband were robbed of a “normal” life, I’d like to list for you things I’m grateful for in my newish life. My silver linings. My don’t-take-for-granteds.

1)      My husband. Duh. The fact that he’s here. I can hug him. I can smell his skin. He can continue to coach me through my crazy.

2)      Food. I know this is really high on the list but a love for food is something me and my Husband always shared, and continue to. (I’ve got homemade dark chocolate brownies in the oven as I write this).

3)      Time. I have so much more of it now that I’m not working. I have time to help nurture this injury. Time for me, time for us, time for Starbucks, time for TJ Maxx, maybe a little too much time for Buzzfeed quizzes.

4)      Empathy.  Tell me your story. I will feel it and I will hold my heart for you. And I will mean it. I’ve learned empathy over the past three years.

5)      Comedy.  When I tell you that sitcoms got me through the really dark, early days after the accident – it’s true.  The nights I was alone, the nights when my neighbors probably could hear me sobbing through the walls? My friends during those dark times? Rhoda Morganstern. Chandler Bing. Niles Crane. Elaine Benes. Comedy. Saved. Me. (And, still does).

6)      Chocolate. This kind of goes with number two, but I really feel like chocolate is worth another mention. (Brownies are cooling).

7)      Family/Friends/Coworkers/Complete Strangers. (This should be higher. I wonder if my Mom will get mad she’s below two food categories).  The people that came out of the woodwork during our two-person catastrophe — simply amazing. The people that prayed. The people that sent food, money and love. The family that called everyday if they couldn’t be here. The family that was here and just sat with me. But the people that still continue to let us know they are still here? Almost three years later? Because they know we’re still wounded. Not just on the outside.

8)      A new city. We moved after the accident to be closer to top-notch medical care. We have a small support team here now. It’s pretty sturdy. And, I’ve made new friends of all ages. I have a friend named Nesie who’s 80-years-old. She feels the need to take care of me. I let her.

9)      Brownies. Holy crap. These brownies with melty vanilla ice cream. Life is good. It’s that easy sometimes.

10)   You. I’ve met some beautifully messy wonderful people who have shown me so much about life and how to live through some shit. I get lost in in your stories.  And they help me. Maybe that’s why I share my brutal honesty sometimes. Because it’s the honesty of others, along with comedy and brownies, that pulls me through.

And I have to give a shout out to therapy, because THERAPY! Therapy has helped me see that I need to be social sometimes as much as I want to hermit. I apparently need to distract myself.  Distract myself from the past and dwelling in what I miss. Remembering what was and missing it too much. That road can cause one to spiral.

Distractions.

Family. Friends. Stories of survival. Joey Tribiani. And brownies. You find what you can to help you live. Find your happiness. The small things will add up.

Because, let me be honest…

In the circle of great folks within this injury, a common thing we do is shine a light on not letting the injury win.  Let me tell you, friends. Sometimes you just have to. You have to let it win.  And I really think it’s okay.  Sometimes you just wave your little white flag, crawl back under the covers and then find a better time, a stronger time to fight back. Sometimes the hard stuff just sucks the smiles and energy from you. We just have to let it win sometimes.

I mean, how do you truly build character by going undefeated anyways?

So wrapping this thing up with some good news: As hard as this life can be, as soul crushing as this injury can get, my husband and I have been working hard with a wonderful doctor and a wonderful nurse within a wonderful team over the last year to bring a baby home. My husband needs this.  He needs a new fire.  He needs a new light from within.  Let’s face it. You can only get so excited about having a wife. But we need this. My soul is telling me it’s time.

The day-to-day emptiness in our home also tells me it’s time.

More good news? It looks like we may be on our way.

Maybe we won’t beat the injury but we’re gonna be kick ass as parents.

LOVE WINS!

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5 Awesome Alternative Ways To Answer “Why You’re In A Wheelchair”

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Let Swayze lead you

 

On a daily basis, I am asked why I am in a wheelchair. The boredom of rehashing the truth day in and day out led to me dipping into the fictional side of my brain and, needless to say, I got creative – too creative – with my answers. I use these answers solely for the randomer on the street who asks and not the people who are regular guest stars in my life. The strangers don’t need the background so if ever you find yourself in a tricky situation, these alternative answers are for you.

1) I was crushed by a stampede of donkeys.

Apparently, you are more likely to be crushed by a herd of stampedes than hit by lightning so, statistically, I felt that this answer carried some weight. People will be skeptical, especially if you live in a city where donkeys are a rare sight. But, hey! A stampede is a stampede. Cast any doubt aside with the theatrics and sound effects of the hoofed beasts frantically heehawing.

2) I thought I was the Golden God.

Inspired by a drug-riddled, rock n’roll scene from Almost Famous, I decided to steal the storyline of getting loaded, jumping off the roof of a building, only to miss the swimming pool by a few inches and crushing every bone in my lower half. When I used this story, I hoped that it would make me seem edgy, reckless and, in the height of my rocker days, the coolest kid in town.

 3) A very serious dancing injury.

Depending on who you are talking to, you can get really inventive with this one from foxtrot to samba. It is important to note that many people have sustained serious leg and back injuries from mimicking Patrick Swayze’s infamous jump from Dirty Dancing, usually practiced at weddings. As you regale folks with this tale of rhythm and romance, they will be silently realizing that this injury could bestow them at any given wedding.

4) A rugby accident.

Being a girl, playing rugby would of course raise a few eyebrows. Whenever I used this answer to explain the presence of the  wheelchair, the conversation would move swiftly onto the world of rugby and, more specifically, women’s rugby. Of course, you can toy around with this and use lacrosse, badminton, golf, bowls or football. Get crafty with your sports. The more unusual, the better. Chess boxing anybody?

5) Spring break shark attack.

This is the holy grail of replies and, believe me, it works the best. Place yourself in Sydney out on a speedboat near Bondi Beach. You and your friends decide to take a dip in the calm Tasman Sea. Suddenly, everything goes black and you wake up to discover that you – in a fit of fight or flight – bravely fought a tiger shark. The shark may have taken a chunk out of your leg, but you emerged the champion.

However, I urge that you use this story with caution. I once told this story to someone, thinking that I would never see them again. Two years down the line, this now friend still believed the truth, thinking that I was some sort of hero. Alas, the truth came crumbling around him one day and he has never forgiven me – five years later. Scott, if you are reading this, I am so sorry that you…fell for my amazing story.

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New Robotic Device For Paraplegics Enables Easier Movement While Standing

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A new robotic device designed to help those with paraplegia stand and function as if they were walking is expected to hit the market as early as next month.

Known as the Tek Robotic Mobilization Device or Tek RMD, the device debuted in 2012 and is the first of its kind to have been launched by Matia Robotics. Founded in 2006, Matia Robotics strives to improve the lives of people with disabilities by enhancing their health, wellness and level of independence.

Matia Robotics CEO Necati Hacikadiroglu, along with several team members, invented Tek RMD based on the specific needs of those with paraplegia, said Steven Boal, who serves on the Board of Directors.

“As you know, when a person is paralyzed from the waist down, they lose the use of their legs but their upper body still has its full function. So, if you can support their legs in such a way that leaves the hands free, they can do everything they used to do with their upper body,” Boal said, adding, “What they needed was a device that will support their legs without taking up any additional space and that will not restrict or limit their upper body functions. (Hacikadiroglu) developed the TEK Robotic Mobilization Device based on these considerations.”

According to the company’s website, there are many benefits to using the Tek RMD.

Ease of Use

Those who are paralyzed often have difficulty transferring into wheelchairs. According to the website, during the transfer process, they “have to lift their body with their arms and throw themselves onto their wheelchairs in order to transfer their body from a bed or a chair. This motion of throwing the body is difficult, dangerous and almost impossible to do without assistance.” Users can access the Tek RMD from the back of the device while seated, making the process easier and safer.

Tek RMD also holds users in an upright position so they do not need to hold on. This enables users to perform routine tasks, such as cooking or ironing. “Movements that require both hands, such as carrying a tray can be easily done with the use of the remote control. Additionally the user can enjoy being at eye level with other people in their daily life,” the site states.

Health and Wellness

Those with paraplegia are encouraged to remain in a standing position for an hour each day. Using wheelchairs that can adjust to standing position can take a great deal of time and effort and do not always get the person fully upright. Matia Robotics claims it is quicker and easier to sit and stand with Tek RMD. “The suspension system containing gas spring balances the weight of the user so that standing up requires just a gentle pull. From the moment they wake up, users can board the device and stand up without needing assistance from others. This comfort encourages the users to stand up countless times, and to do various daily activities while standing up,” the site states.

Size

Matia Robotics touts Tek RMD as the world’s smallest motorized standing movement device, making it easier to maneuver through small spaces and narrow doorways. The device is also able to maintain its balance—in spite of its small size—because “it grabs the users from the balance points and prevents any misuse or unwanted movements that would result in a loss of balance,” the site states.

Boal said user responses to the Tek RMD have been very favorable. In fact, Yusef Akturkoglu, who became paralyzed after falling from a horse several years ago, has found it to be quite liberating. “At first I was very nervous. The idea of being able to stand up was spooky. I mean, I did stand up over the years during physical therapy but with this, you do it on your own, so it was weird. Then I stood up, and it was great,” Akturkoglu said.

There are more perks to using the Tek RMD than what the company describes online, Akturkoglu said. “After many years, I was (finally) at the same eye-level with people around me. (I enjoyed being) able to go around without people pushing you from behind, to use the toilet, to sit and stand, to see inside of a pan while cooking, cleaning (and) countless little things you can do. But the best part is, this device gave me the option of being alone. If you are disabled, you always need someone around you to do things for you. This saddens you. With this device, I can just stay home alone.”

Based on the feedback they’ve received so far, Boal expects the Tek RMD to be in demand for quite some time. “We have been approached by potential users and hospitals from all over the world. Our team is working day and night to take the necessary steps to start delivering the devices to users,” Boal said, noting that production will be limited.

Those who are interested can find more information and even make a reservation at http://www.matiarobotics.com.

According to Boal, Matia Robotics is currently in the final stages of completing the European certification process and expects to begin production as early as next month. “First deliveries to rehab centers and a number of people who reserved an early position in the production line will commence in March,” he said, adding, “We are also in discussion with distributors who wish to sell and service the devices in various countries. As these are confirmed, they will be published on the website.”

When it comes to the United States, the FDA must grant approval before Tek RMD can be sold to consumers, Boal said. The device is also not yet covered by insurance companies and retails for about $15,000 in the United States, shipping not included.

“We are very conscious of the desire to have the device approved by the various reimbursement agencies. We are very confident we can demonstrate a very strong economic argument for them to include the device in their approved lists. We can demonstrate the user’s independence will reduce care cost. Also, not having the need to modify homes to accommodate wheelchairs and the improved general health (due to) simply standing and regularly transitioning from sitting to standing position will be a benefit,” Boal said, noting, “We cannot start that process until we have the product approved by the various country authorities. So, for the near future, this is a self-pay option.”

In the meantime, Matia Robotics is working on its next big thing. “Our goal has always been to develop technology that will help people—specifically people with walking disabilities,” Boal said. “Tek RMD is our first product to hit the market. Once it does, our R&D team will start working our next device, which we believe will be as game changing as the Tek RMD. We have the idea, drawings, and even applied for patents; we just need the time to take the concept and make it into a product.”

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