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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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Top 10 Toys For Children With Disabilities

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Children with disabilities can enjoy most of the same toys their friends play with everyday. Some of these toys have special switches that make them easy for any child to activate.

In no particular order, here are the top 10 toys for children with disabilities.

1) Alphabet Sound Puzzle

This classic wooden puzzle from Melissa & Doug can help sighted and blind children learn the alphabet. Underneath each of the letters are small pictures of items that begin with that letter (A for apples, E for eggs, T for turtles).

Blind children can feel the letters and puzzle with their hands. When they place a letter in the correct spot, they hear the name of the letter.

You can get the Alphabet Sound Puzzle from Fat Brain Toys for $17.95.

2. Braille Markers

Children with limited sight can identify colors with the Braille marking on Do-A-Dot Art’s Sponge Tip Markers.

This is a great idea, as many people would not think blind or nearly blind children would draw pictures.

The markers come in red, yellow, blue, orange, green and purple.  Also, every parent will love these markers because they don’t dry out when you leave the cap off!

Do-A-Dot Art Sponge Tip Markers also cost $17.95, and they are available from Hearmore.com.

3. Light Show Stick

This spinning, colorful LED light stick is not just perfect for the Fourth of July. It’s also a useful toy for hearing-impaired children.

“We use the light stick product as a visual reward when we are testing for awareness of sound,” one parent said.

“We also use the product to motivate our son while he is doing tummy-time exercises to encourage him to lift his head and turn from side to side,” the parent added.

The Light Show Stick has batteries included and features 32 light patterns. It’s available from Fat Brain Toys for $7.95.

4. Bookworm Audio Book

Special needs students will enjoy hearing their loved ones reading their favorite stories with the Bookworm Audio Book.

Instead of relying on the availability of push-button audio books, Bookworm’s memory card allows parents to create their own audio libraries.

Children can press buttons to hear the audio as they read each page.

Bookworm Audio Book is available from eSpecialNeeds for $199.

5. Skateboard Swing

Children with balance issued can have fun with the Skateboard Swing even on a rainy day.

It can calm children and help them focus their attention on upcoming homework.

The swing weighs nine pounds and is portable, so it can be set anywhere that a child would need its active yet calming effects.

Skateboard Swing is available from Fun & Function for $210. 

6. Whisper Tilt and Spin

This tilted wooden board allows children who have balance issues to spin quietly on an angle, providing sensory integration and vestibular therapy.

It has a large surface, so kids up to 200 pounds can spin with their legs folded, and little ones can use it for tummy time.  Whisper Tilt and Spin is available for Fun and Function for $199.99.

7. Jumpsmart Electronic Trampoline

This triangular trampoline combines action, sound and balance.

Children up to 80 pounds can grip the handlebars while bouncing on the trampoline.

As they bounce, the children enjoy silly songs and learning games. This promotes fitness and cause-and-effect learning.

Jumpsmart Electronic Trampoline is featured on the cover and Page 50 of the Toys R Us Catalog for Differently Abled Kids.

8. Vtech Tote & Go LapTop Plus

This colorful miniature laptop is great for autistic children, because it promotes verbal responses.

It also promotes cause-and-effect learning, as the child pushes button and the laptop responds.

Vtech Tote & Go LapTop Plus builds a variety of skills, including music, vocabulary, math and mouse skills. It is available new from Amazon for $70.99 or used for as low as $5.49.

9. Daisy the Duck

By squeezing Daisy’s wing or using an adaptive switch, similar to those found in accessible vehicles, your child can get Daisy to jump, flap her wings and sing “If You’re Happy and You Know It.”

Daisy the Duck helps to promote visual attention and auditory input, and she is available for $56 from Assistive Technology Center.

10. Tickle Me Big Bird

The popular “tickle me” Sesame Street friends are available in switch-activated form for children who would have difficult activating a regular doll.

For example, Tickle Me Big Bird is available from Assistive Technology Center.

 

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Sensimat Systems Announces Indiegogo Campaign To Launch Mobile Pressure Monitoring System For Wheelchair Users

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Pressure sores are a major challenge for wheelchair users and can lead to risks of infection, being bedridden, hospitalization and mortality. In the U.S. and Canada alone, there are over 3 million wheelchair users, of which over 300,000 have a spinal cord injury that impairs sensation under the torso and increases susceptibility to pressure sore injuries. A new device called the SENSIMAT for Wheelchairs is a smart cushion that can help prevent pressure sores for wheelchair users, =and is crowdfunding the project via Indiegogo.

While able-bodied people have sensations that tell them to automatically shift position, wheelchair users with sensation impairment can sit in the same position nearly indefinitely. This constant pressure on tissues can create changes in blood circulation, starving them of oxygen and nutrients. The tissue eventually dies and a pressure ulcer forms. ”Soon after I got injured, within two weeks I developed a pressure ulcer and it took me five and a half years to get rid of it,” said Philip Stiles, a wheelchair user in the SENSIMAT video. “It started out as a little red marked bruise…it grew and grew and grew…to the point that it exposed my spinal cord to the open air. I didn’t get out of bed for over two months. It drove me nuts.”

The SENSIMAT, described as a “Fitbit for seating”, is a cushion embedded with multiple pressure sensors. It can be placed underneath any wheelchair cushion and actively records the forces on it as the user sits throughout the day. It sends the data to a smartphone to alert the companion app of pressure distributions, relief patterns, and can push reminders to shift position. The data is also sent wirelessly to the user’s healthcare provider, who can monitor the user’s relief regimen, and know when there are problems with pressure relief. It’s been validated at the Toronto Rehabilitation Institute and will continue its testing in research centers and wheelchair users.

You can back the project on Indiegogo now. There are options for buying one for yourself, for a wheelchair user in need or for research purposes. Priced around $300, they are expected to ship in June 2014.

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