Inspirational Stories

Bionic Legs Give Paralyzed Woman a Path to the Freedom She Had Before Skiing Accident

http://www.noozhawk.com/noozhawk/article/amanda_boxtel_paralyzed_woman_with_bionic_legs_20130929

By Emma Hermansson, Noozhawk Intern | @NoozhawkNews

With the assistance of a her physical therapist, Amanda Boxtel demonstrates how she can walk with her bionic legs in spite of her paralysis. “To be able to take one step and then another, and to make it feel normal in my head ... is amazing,” she says. (Emma Hermansson / Noozhawk photo)

Relating her story of how she can walk again, Amanda Boxtel keeps Cottage Rehabilitation Hospital audience at rapt attention

After a skiing accident left her paralyzed from the waist down, Amanda Boxtel was told she would never walk again. Refusing to surrender, she set out to prove to her doctors — and to herself — that she could overcome her fate.

The journey took her nearly 20 years, but thanks to an artificially intelligent bionic device, she was able to achieve her improbable goal. On Sunday, she shared her extraordinary story as part of Cottage Rehabilitation Hospital's Empowerment through Medical Rehabilitation series at Fess Parker’s DoubleTree Resort.

Boxtel was skiing in Aspen, Colo., in 1992 when she took her life-altering fall and found herself paralyzed.

“I was 22 years old," the native of Brisbane, Australia, told the audience. "I was an aerobics instructor. I was a dancer. I was an athlete.

"Then, all of a sudden, all of that changed in a split second.”

A few weeks after the accident, a young doctor came to her hospital room to deliver the news.

“'Amanda, you will never walk again',” Boxtel recalled him telling her. “But in that moment, I decided to prove him wrong.”

Boxtel asked the audience members to steady their feet on the ground and hold their hands straight forward. To demonstrate what it’s like to be paralyzed, she asked everyone to try to move their hands and feet only with their thoughts. Nobody could.

“Surrender your mind to only the thought of moving," she explained. "All you have is the memory of how it was."

Boxtel described paralysis as a cold injury. It’s a loss of sensation but it also means having to deal with psychological issues. She said it took her several weeks to fully understand what the doctor had told her.

But although she couldn’t walk, Boxtel was determined to keep living a rich and full life. As proof, she played a video of all the activities she did before the accident. She’s skiing, bicycling, skydiving and dancing.

After fast-forwarding to after the accident, the video shows Boxtel still skiing, bicycling, skydiving and dancing. She’s living a fully active life with the help of physical means.

“I could still live a magical life,” Boxtel said. “But there was still one thing I couldn’t do, that wasn’t invented yet. Walk.”

For many years, she tried a lot of different physical therapy regimens and was able to regain some movement, but no method could help her walk again. Eventually, she started to imagine some type of robot.

In July 2010, Boxtel finally proved her doctor wrong. Berkeley Bionics, now Ekso Bionics, had developed a new exoskeleton called eLEGS, an artificially intelligent bionic device. With the help of a 5-foot-7-inch frame, she was able to walk almost naturally for the first time in 18 years.

“To be able to take one step and then another, and to make it feel normal in my head ... It was amazing,” Boxtel said. “I’m able to walk with these legs, on the ground and in alignment.”

Taking her first steps in a long time wasn’t easy, and Boxtel said she had to relearn "Walking 101." As she spoke, the atmosphere in the hotel meeting room changed when Boxtel moved from her wheelchair to her eLEGS. Everyone watched quietly as she took a few steps, and then stood on her own.

“It’s a great reversal because I’m standing and you’re all sitting down,” she said with a smile.

In 1995, Boxtel co-founded Challenge Aspen, a nonprofit organization that assists adaptive athletes in reaching their athletic goals. She wanted to set herself free again by returning to the sport that took away the use of her legs.

“I feel as I stand here in front of you, I’m walking for you," she said. "I’m walking for my mother, for my sister, for my friends. I’m walking for everyone who shares the same dream as me."

Wiht help from her physical therapist, Boxtel is able to use her eLEGS for one hour a day, five days a week. She’s the first person in the United States to own her own.

“I just want to say to everyone in a wheelchair, ‘prepare your bodies to walk, cause now we can’,” she exclaimed.

Sunday's presentation, ”Enhancing Mobility with Bionic Technology,” was sponsored by the Cottage Rehabilitation Hospital Foundation. Each year, the foundation sponsors a public presentation by exceptional people on topics concerning medical rehabilitation and its empowering effects on the lives of people with disabilities.

Click here for more information on Cottage Rehabilitation Hospital, or call 805.687.7444.

— Noozhawk intern Emma Hermansson can be reached at ehermansson@noozhawk.com. Follow Noozhawk on Twitter:@noozhawk@NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.

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Watch this inspiring X-Factor audition!
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If this doesn't make you stronger than nothing will.
 
 This is one of the most inspiring videos I have ever seen. Please take a minutes to view it. He speaks English even though the sub-titles are in German. Don't worry, you will understand it.. I hope you will choose to watch this.

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A Dog and a Child Moment

Dogs are the best!!
 
Had to share this one. Female golden Lab with a little Downs Syndrome boy who has likely never seen a dog up close before.
 
The dog is so gentle & keeps trying to engage the child. What a beautiful animal! If you only see one e-mail this week - hope this is the one.
 

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A volunteer on a mission

Players of varying abilities take to the field and learn from each other in the Atascadero Youth Soccer Association

BY GLEN STARKEY

Like most kids, the members of the Red Dragons soccer team just wanted to have fun, hone their soccer skills, and play. The problem is, according to their coach, that last season they didn’t initially feel included in the Atascadero Youth Soccer Association (AYSA). You see, the Red Dragons are part of TOPSoccer, a community-based training and team placement program for young athletes with disabilities.

The team is coached by volunteer Marietta Szydlowski, whose day job is working with developmentally disabled adults through the Tri-Counties Regional Center. She asked the AYSA board, of which she’s a member, to put her team on last season’s schedule—and to their credit, the association tried to accommodate the Red Dragons in the league by giving them assigned times to play and fields to play on. But there were no teams to play against.

“It was kind of upsetting because they put us on the schedule, but I had to go to the coaches of the other teams and ask them if they were willing to play us,” Szydlowski said.

According to AYSA’s new Regional Commissioner Carrie Ragain, who’s also on the board of directors, the association did its best to accommodate the Red Dragons, but turnover on the board and a lack of understanding about the TOPSoccer program caused some confusion.

Still, Szydlowski didn’t think the situation was fair, so she went before her own board and told them so.

“My main thing was that it was frustrating. ‘Here you want to include these guys, but really you’re not if you’re not giving us teams to play against,’ I told them. I also had one of the parents come and talk to the board, and she said, ‘Your teams would be lucky to play us.’ She really had an impact. After she spoke, the board got quiet. When I spoke to them later about next season, they assured me they heard us loud and clear and that we’d be on the schedule next year.”

According to Ragain, the board actually went out of its way last season to arrange games for Szydlowski’s team, but she agrees there was some trepidation, especially for the coaches of the youngest players.

A few teams weren’t willing to play the Red Dragons—in part because the Red Dragons had players as old as 18 and the AYSA league is divided by age, so some coaches thought their kids were too small to go up against older kids, disabilities or not.

“This was a live-and-learn situation,” Ragain said. “The board decided [for next season] to have the Red Dragons play the U12 teams because those kids are old enough to understand. Younger kids may not even realize what special needs are.”

In the end, the Red Dragons had a team to play every weekend of the season but one.

“A lot of teams did step up and play us, and one parent told me, ‘This is the best game my daughter ever played,’ because it was so inspiring,” Szydlowski said. “We also played against a Girls U18 team, and these were girls that played really competitive high school soccer, but they were helping our players make goals and cheering for them, helping them up if they fell down. I have one player who’s on crutches.”

As far as Szydlowski is concerned, it’s just as important for “regular” kids to play against her special needs kids as it is for her kids to play “regular” kids. The lessons go both ways and teach sportsmanship, grace, and that winning isn’t the most important thing in life. Szydlowski’s message is simple: All kids should be valued, encouraged, and supported.

“Our organization services over 700 children in Atascadero,” Ragain wrote to New Times in a follow-up e-mail. “Our board is fully a volunteer organization who works very hard to service all the children of our community to the best that we can. Most of us are full-time working parents and as I mentioned, last January, most of our board was new to the program and there was a large learning curve for all areas. Each new board member had to learn and deal with their responsibilities, which usually takes one full season to understand.”

AYSA will be transitioning to AYSO (American Youth Soccer Organization) and TOPSoccer will now be called VIP. Ragain encourages all interested parties to participate in next summer’s season.

Staff writer Glen Starkey can be reached at gstarkey@newtimesslo.com.

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WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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From: Susan LeVine
Date: May 24, 2013, 12:25:14 PM PDT
To: Retta Slay
Hi Retta,
Here is the story I told you about my daughter's experience with soft ball.
We were living in a suburb of Chicago at the time. My daughter was about 14 and I was trying to get her involved in school activities. I talked to the principal about ways that she could get involved. She suggested that my Kelly could be the ball girl for the basketball team or help the referee at some other sporting event. Every suggestion that I made to Kelly was quickly rejected as well. Kelly didn't want to do anything that I suggested. Then one day she came running to the car when I came to pick her  from school. She was waving a flyer in her hand for tryouts for a girls softball team. I wasn't sure that it would be right for Kelly but I was excited that she found something that she was excited about. The experience was wonderful. Kelly's dad was worried."What if she got hit in the face or was injured.", he said. Well, of course this is a concern for every parent but when you have a child with a disability this can be even more of a concern. I don't know why but fear was not something that I was going to embrace. I tossed the ball with Kelly after dinner most nights. Actually the only injury she had was when I threw the ball and hit her mouth. The team was a safer place to play ball than with me! Kelly loved being a part of the team. She was definitely an important member of the team even thought there were amazing players who had a real talent for the game Kelly played hard too. She even hit a double and I think that the coach was even more excited then I was when this happened. The team played so well that they were the champions for their division. At the end of the season the girls on the team asked if they could borrow Kelly's jersey. They all got together and had the back of her jersey lettered with the title captain. This was an amazing experience.
I realized that Kelly brought out the best in her peers and they brought out the best in her. All of those freezing days in Chicago that I had to sit on a cold metal bench were worth it! We still have the trophy that Kelly won with her team and I think Kelly still has the jersey tucked away in some corner of her drawer.
Now Kelly is 27 and she recently found a soft ball team to be a part of. She hasn't played yet but when she does I hope I'm there to see her hit another double.
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Oh! If only
     *The Folded Napkin.*  *A Truckers Story*
 *If this doesn't light your fire ... your wood is wet!*

I try not to be biased, but I had my doubts about hiring Stevie. His
placement counselor assured me that he would be a good, reliable busboy.

But I had never had a mentally handicapped employee and wasn't sure I
wanted one. I wasn't sure how my customers would react to Stevie.

He was short, a little dumpy with the smooth facial features and
thick-tongued speech of Downs Syndrome. I wasn't worried about most of my
trucker customers because truckers don't generally care who buses tables as
long as the meatloaf platter is good and the pies are homemade.

The four-wheeler drivers were the ones who concerned me; the mouthy college
kids traveling to school; the yuppie snobs who
secretly polish their silverware with their napkins for fear of catching
some dreaded "truck stop germ" the pairs of white-shirted business men on
expense accounts who think every truck stop waitress wants to be flirted
with.

I knew those people would be uncomfortable around Stevie so I closely
watched him for the first few weeks.  I shouldn't have worried. After the
first week, Stevie had my staff wrapped around his stubby little finger,
and within a month my truck regulars had adopted him as their official
truck stop mascot.

After that, I really didn't care what the rest of the customers thought of
him. He was like a 21-year-old kid in blue jeans and Nikes, eager to laugh
and eager to please, but fierce in his attention to his duties. Every salt
and pepper shaker was exactly in its place, not a bread crumb or coffee
spill was visible when Stevie got done with the table. Our only problem was
persuading him to wait to clean a table until after the customers were
finished. He would hover in the background, shifting his weight from one
foot to the other, scanning the dining room until a table was empty. Then
he would scurry to the empty table and carefully bus dishes and glasses
onto his cart and meticulously wipe the table up with a practiced flourish
of his rag. If he thought a customer was watching, his brow would pucker
with added concentration.

 

He took pride in doing his job exactly right, and you had to love how hard
he tried to please each and every person he met.  Over time, we learned
that he lived with his mother, a widow who was disabled after repeated
surgeries for cancer. They lived on their Social Security benefits in
public housing two miles from the truck stop. Their social worker, who
stopped to check on him every so often, admitted they had fallen between
the cracks. Money was tight, and what I paid him was probably the
difference between them being able to live together and Stevie being sent
to a group home. That's why the restaurant was a gloomy place that morning
last August, the first morning in three years that Stevie missed work.

He was at the Mayo Clinic in  Rochester getting a new valve or something
put in his heart. His social worker said that people with Downs Syndrome
often have heart problems at an early age so this wasn't unexpected, and
there was a good chance he would come through the surgery in good shape and
be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word
came that he was out of surgery, in recovery, and doing fine.  Frannie, the
head waitress, let out a war hoop and did a little dance in the aisle when
she heard the good news.    Marvin Ringers, one of our regular trucker
customers, stared at the sight of this 50-year-old grandmother of four
doing a victory shimmy beside his table.

Frannie blushed, smoothed her apron and shot Marvin a withering look.    He
grinned. "OK, Frannie, what was that all about?" he asked.

"We just got word that Stevie is out of surgery and going to be okay."

"I was wondering where he was. I had a new joke to tell him. What was the
surgery about?"    Frannie quickly told Marvin and the other two drivers
sitting at his booth about Stevie's surgery, then sighed: " Yeah, I'm glad
he is going to be OK," she said. "But I don't know how he and his Mom are
going to handle all the bills. From what I hear, they're barely getting by
as it is." Marvin nodded thoughtfully, and Frannie hurried off to wait on
the rest of her tables. Since I hadn't had time to round up a busboy to
replace Stevie and really didn't want to replace him, the girls were busing
their own tables that day until we decided what to do.

After the morning rush, Frannie walked into my office. She had a couple of
paper napkins in her hand and a funny look on her face.

"What's up?" I asked.    "I didn't get that table where Marvin and his
friends were sitting cleared off after they left, and Pete and Tony were
sitting there when I got back to clean it off," she said. "This was folded
and tucked under a coffee cup."  She handed the napkin to me, and three $20
bills fell onto my desk when I opened it. On the outside, in big, bold
letters, was printed "Something For Stevie."

"Pete asked me what that was all about," she said, "so I told him about
Stevie and his Mom and everything, and Petelooked at Tony and Tony looked
at Pete, and they ended up giving me this." She handed me another paper
napkin that had "Something For Stevie"scrawled on its outside. Two $50
bills were tucked within its folds. Frannie looked at me with wet, shiny
eyes, shook her head and said simply: "truckers."

That was three months ago.  Today is  Thanksgiving, the first day Stevie is
supposed to be back to work.    His placement worker said he's been
counting the days until the doctor said he could work, and it didn't matter
at all that it was a holiday. He called 10 times in the past week, making
sure we knew he was coming, fearful that we had forgotten him or that his
job was in jeopardy. I arranged to have his mother bring him to work. I
then met them in the parking lot and invited them both to celebrate his day
back.  Stevie was thinner and paler, but couldn't stop grinning as he
pushed through the doors and headed for the back room where his apron and
busing cart were waiting.

"Hold up there, Stevie, not so fast," I said. I took him and his mother by
their arms. "Work can wait for a minute.  To celebrate your coming back,
breakfast for you and your mother is on me!" I led them toward a large
corner booth at the rear of the room.  I could feel and hear the rest of
the staff following behind as we marched through the dining room. Glancing
over my shoulder, I saw booth after booth of grinning truckers empty and
join the procession. We stopped in front of the big table. Its surface was
covered with coffee cups, saucers and dinner plates, all sitting slightly
crooked on dozens of folded paper napkins. "First thing you have to do,
Stevie, is clean up this mess," I said. I tried to sound stern.

Stevie looked at me, and then at his mother, then pulled out one of the
napkins. It had "Something for Stevie" printed on the outside. As he picked
it up, two $10 bills fell onto the table.

Stevie stared at the money, then at all the napkins peeking from beneath
the tableware, each with his name printed or scrawled on it. I turned to
his mother. "There's more than $10,000 in cash and checks on that table,
all from truckers and trucking companies that heard about your problems.
"Happy Thanksgiving."

 

Well, it got real noisy about that time, with everybody hollering and
shouting, and there were a few tears, as well.

But you know what's funny?  While everybody else was busy shaking hands and
hugging each other, Stevie, with a big smile on his face, was busy clearing
all the cups and dishes from the table.

Best worker I ever hired.

Plant a seed and watch it grow.    At this point, you can bury this
inspirational message or forward it fulfilling the need!

If you shed a tear, hug yourself, because you are a compassionate person.

Well.. Don't just sit there! Send this story on!

Keep it going, this is a good one.

A parent run website of special needs community resources: events, specialists, workshops, clubs, activities and travel ideas.

Volunteer Opportunities


Tutors needed in all subjects.

To volunteer for any/all of these wonderful programs, call 805/681-9165 or email info@sbsnap.org

              

"321 Playhouse" Down Syndrome Family Support always welcome volunteers. Call Tara Vasquez at (803) 269-6313 to  register.

               -------------

Hearts Therapeutic Santa Barbara is looking for dedicated volunteers who are willing to commit to a weekly 4-hour shift.

See their webpage for details

               -------------

Hidden Wings, a non-profit for autism, welcomes volunteers of all talents

Blog Posts

January 23, 2015, Ed Robert’s Day

Posted by Retta Slay on January 27, 2015 at 11:00am

Fight for your service system!

Posted by Retta Slay on January 20, 2015 at 10:13am

ILRC goes caroling in support of SSI

Posted by Retta Slay on January 6, 2015 at 11:00am

Zero Co-Pay Epi Pen Link 2015

For those of you who have kids/family members that need Epi pens, here is the zero co-pay link for 2015!

https://www.epipen.com/en/copay-offer

1/15/15

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