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On the Blog

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Celebrate September as Spinal Cord Injury Awareness Month

In a mere 48 minutes, someone in the United States sustains a spinal cord injury (SCI) and becomes part of the millions worldwide living with paralysis. The month of September is acknowledged as SCI Awareness Month in which, foundations, companies, and families throughout the country make a moves to promote awareness.

The Triumph Foundation in California has begun a viral hashtag campaign to help celebrate. The foundation is encouraging SCI survivors to post pictures of them doing things outside their wheelchair using the hashtag #morethanjustmychair – slaying the assumption that the paralysis population is confined to wheelchairs.

Tighten the Drag Foundation in Florida is hosting their 4th Annual Fall Inshore Slam benefiting spinal cord injury recovery rehabilitation. The tournament is open to everyone and 100% of the proceeds go towards the cause. The event is Saturday, September 26th, 2015.

That same weekend, Virginia G. Piper Sports and Fitness Center for Persons with Disabilities (SpoFit) is hosting an awareness event in Arizona. That morning, participants can meet local non-profits that serve the SCI community while experiencing demos and delicious food.  The entire Arizona community is invited to Phoenix to be a part of I Roll, You Walk…Together We Live.

New York’s Disability Opportunity Fund is celebrating the ADA’s 25th anniversary with keynote speakers and open discussions. Join them on September 17th in Mellville for deeper level conversations about disability rights.

Although there are countless events taking place nationwide, you don’t have to travel to make an impact in SCI awareness. With organizations like The Miami Project to Cure Paralysis, you can make a donation in honor of a loved one, caregiver, scientist or organization who is working to improve the lives of those injured.  You can also spread the message by changing your Facebook profile picture to the SCI support ribbon or tweeting and inviting friends to get involved in the discussion.

Nick Buoniconti of the Buoniconti Fund once said: “Paralysis does not discriminate.  People need to realize that paralysis can happen to anyone at any time. But the reality of today’s statistics can’t be disputed.  Every 48 minutes another person in the U.S. will become paralyzed. That is simply unacceptable. Each of us must do what we can to make a difference.  I am personally asking you, will you stand up for those who can’t and do one or more of the following?”

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United Spinal Association Joins as Sponsor of Push Nation Festival 2016

As we reach the eight month countdown to our first annual Push Nation Festival 2016, things are really pushing forward. We are thrilled to announce one of our exceptional sponsors: United Spinal Association.

The United Spinal Association is an organization dedicated to pushing the spinal cord injuries and disorders community towards a better tomorrow. They provide information to patients, loved ones, care providers, and professionals alike; hoping that they can help promote independence and create a support network for themselves.

United Spinal was founded in 1946 by a group of World War II veterans with severe paralysis. They vowed to advocate for civil rights and greater self-independence after receiving poor treatment at their local New York VA hospital. Since then, the group has persevered beyond their SCI/Disorders to live a fulfilling and productive life, spreading the message to others that with the strength to believe it and a bit of courage – others can be happy too.

Today, United Spinal pushes their research and education initiatives. You’ll see them involved in government policy, civil rights, accessibility, architectural design, and competitive athletics. This makes them the prominent non-profit dedicated to helping those patients with spinal cord injuries or disorders.

About Push Nation Festival 2016:

Push Nation Fest is a fun, fresh event designed to bring the paralysis community together in one place, focused on pushing each other to learn, dream and achieve more than ever before.

Featuring groundbreaking technology, captivating entertainment and hands-on workshops, the inaugural Push Nation Fest will be like no other you’ve attended in the past. Join us in Tampa, FL on April 22nd from 2-8pm and April 23rd from 10am-5pm as we celebrate the people, products and technology that are improving the future landscape of the paralysis community.

Pushing the Paralysis community toward a better tomorrow.

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Uber Black Car Taxi

Uber and Accessibility: Whats next for the disability community?

Uber and Accessibility: Whats next for the disability community?

Uber has recently been under fire for its services’ lack of user-friendliness after a collection of wheelchair users were poorly treated by the taxi service. With the ADA reaching its 25th anniversary this year, most trades have gotten up to speed with accessibility. However, the transportation industry has been one of the slowest to convert.  Under the ADA, all transportation providers are required to accommodate wheelchairs if the equipment can be stowed in the vehicle. Drivers must also accommodate passengers with service animals such as guide dogs.

Uber is currently in settlement negotiations in a suit brought by the National Federation of the Blind in California last September. It mentions 40 cases in which UberX drivers refused to offer their services to people with animal aides. Unfortunately, this is just one of many reported issues.

These recent law suits have gone after Uber’s inability to oblige all disabilities despite its company policy “to accommodate all users.” The company rebuttled by claiming that because it’s a technology company, the ADA transport rules don’t apply. The ride sharing applications like Uber, Lyft, and SideCar consider themselves Transportation Network Companies, which places them in a gray area when defining the federal regulations they must abide by.

Despite the recent bad press, Uber has been actively working towards accessibility for all. The company has recently developed UberWAV and UberASSIST. But these programs are still in their very early stages.  UberWav partners with wheelchair accessible city taxis to be available upon request, but users don’t get that “nice black car” experience. UberAssist was developed to request specially trained drivers for seniors and disabilities. However, Uber Assist excludes wheelchairs and animal aides. These programs are new developments across the nation and are currently offered in five US cities including San Francisco and New York. It’s still to be determined whether it will spread to other cities.

According to the Daily News New York – Uber NYC has about 20,000 cars in their fleet and none are considered wheelchair accessible. With the company valued at over $14 billion, it’s a worthwhile investment to purchase some wheelchair accessible vehicles. According to the New York Daily News, ,James Weisman, president of United Spinal Association, said Uber has the money and capacity to get accessible cars on the road. He proposed that Uber give drivers financial incentives to buy wheelchair-accessible cars.

Uber Disability Policy

For now, Uber offers voluntary training where drivers are told they must serve customers with wheelchairs or guide dogs. Uber’s Code of Conduct notes that violating laws pertaining to transporting disabled riders “constitutes a breach of the parties’ licensing agreement.” An Uber spokesperson says that reported discrimination typically ends with a driver’s suspension or deactivation.

Until the courts settle whether Uber is a software company or transportation company, the disability community will just have to be patient and try to work with Uber. For now, it seems the company has a long way to go in order to make its transportation network fully accessible. We at Push Nation Fest hope for the best resolution.

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HighTops

When PUSH Comes to LIVE

The people at Push Living don’t let the limitations of a wheelchair stop them from traveling the world.  The organization is dedicated to being the leading light for people with disabilities exploring tourism, leisure, and lifestyle mediums.

Committed to making the world “accessible to all”, Push Living is taking the steps to create change. They are doing so by educating and enlightening the public to transform their preconceived beliefs of what people with disabilities can and cannot do.

Who’s the voice behind Push Living?

The voice behind Push Living is Deborah Davis, a sales and marketing, training, educating, advocacy, mentoring and public speaking extraordinaire. She is making her mark through her efforts to raise awareness for those living with disabilities.

In addition to being an accomplished business woman and world traveler, she’s a loved wife and mother of two girls. Deborah is an inspirational individual who, despite her obstacles, has defied expectations.  Deborah sustained a C6/7 spinal cord injury during a car accident at age 18 that rendered her an incomplete quadriplegic.

However, she didn’t let that stop her. Over the course of her adult life, Deborah has done it all. She’s obtained professional roles specializing in medical equipment and supplies sales and marketing. She’s been professional fundraiser for Not for Profits in addition to her positions as  Director of Development and Public Relations and Executive Director for Abilities of Florida.

Davis has been appointed into several professional organizations including being elected to the Brain & Spinal Cord Injury Board for the State of Florida, serving as President of the Business Coalition for Americans with Disabilities, being a Board Member and VP of the Florida Rehabilitation Association, and participating as a member of The National Society of Fund Raising Executives.

Deborah shares her story all over the country and her expertise in accessible tourism and inclusion. She hopes to spread disability awareness, education, and inspiration. Recently, Deborah was the Keynote Speaker for the 2014 Michigan POHI/SXI Conference.

So what do Deborah and Push Living have to say these days?

It’s an issue that many overlook: What do you do when you go to a restaurant or bar that only has stools and high-tops? What was meant to be a relaxing happy hour with co-workers has become an evening of awkward neck pain for those in wheelchairs. The ADA was adopted for this exact situation.

This is where the #DroptheHIGHTOPS Campaign comes into play. A movement focused on bringing awareness to the hospitality industry about those pesky high tops. The campaign encourages businesses to drop some of those high tops to make everyone feel accommodated and comfortable. To be a part of the cause, send photos to Push Living of your experiences with high tops and how it has affected you. #DropTheHighTops will then with then post the photos to their “Hall of Shame.” Find out more about the campaign here.

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The Power of Adaptive Sports

Did you know that adaptive sports were created in 1948 by Dr. Ludwig Guttman as a rehabilitation method for spinal cord injured patients in England?  Dr. Ludwig’s works eventually lead to the creation of the International Stoke Mandeville Games, a competition for athletes with SCI, and later the first wheelchair Olympics in 1960. These developments have opened doors to the disability community – especially those with SCI.

According to the National Spinal Cord Injury Statistical Center there are 12,500 new cases of SCI in the U.S. every year. As of 2014, between 240,000-337,000 people are subject to this catastrophic injury. 52% of these survivors are paraplegics while 47% are quadriplegics. An SCI does not just affect an individual physiologically. This type of injury also affects one’s emotional, psychological and spiritual well-being. This article explores the effects of adaptive sports on one’s quality of life.

A study conducted by Lundberg showed that the participation in adaptive sports and recreational activities helps reduce negative mood states and aids stress reduction. This is especially important as SCI individuals with acquired disabilities experience higher rates of negative mood than individuals without disabilities. Providing a sense of competence and vigor, adaptive sports promote social activity and redevelopment skills that are crucial to the recovery of a catastrophic injury. The change in mindset that can result from participating in activities previously thought out of reach or unimaginable is incredible.

In regard to physical health, athletics appear to decrease morbidity in several areas including incidence of urinary tract and respiratory infections, severe spasticity and decubitus ulcers.

With the advancement of technology and increased participation, there is a wide variety of sports SCI patients can participate in. Here are just a few options here in Florida:

 

SCI survivors like Paralympic competitor Oz Sanchez or basketball player Alana Nichols are certainly making their mark in the adaptive athletic world and there have been some amazing milestones. For example, Pete Reiki became a complete paraplegic when he was involved in a rock climbing accident. He vowed he would climb again – and he did! In 1999, he successfully reached the summit of Mount Rainier independently.

It is incredibly encouraging and inspiration to see athletes like Reiki going out there and accomplishing their goals. If you’re interested in athletics and haven’t yet taken the steps to participate, we encourage you to follow your dreams!

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Life with muscle spasticity

Our spinal cord is the key component to sending signals from the brain to the very corners of the body.  So what happens when those signals are disrupted?  Depending on how the spinal cord is injured it can leave the signals either completely or partially cut off from the brain. The result is a Quadripelgia (Tetraplegia) or Paraplegia. When a catastrophic injury like an SCI occurs, people often experience an array of side effects due to lack of motor use and movement.  One of the most common and most varied is muscle spasms.

So what are muscle spasms?

                Muscle spasticity is an uncontrollable tightening or relaxing of muscles. About 65%-78% of the SCI population suffers from some form of spasticity, occurring mostly in the cervical (neck), than thoracic (chest) and lumbar (lower back) injuries. It’s usually sudden, resulting in an involuntary flexing or bending of a limb.

SCI patients have limbs that are typically stiff or tight at rest, causing difficulty relaxing or stretching and a lack of control of movement. The most common type of reflex muscle contraction seen in SCI patients are extensor spasms. These are a ridged straightening of knees and pointing of toes. Flexor spasms, which cause bending or drawing up of a limb, are the second most common followed by clonus, which is a fast rapid collection of movements.

Muscle spasms are a struggle for some injured patients because the pain can vary from mild to severe and can last seconds to longer than several minutes. These episodes can also cause sleep disruption, difficulty with breathing, difficulty with movement, pressure sores, digestive issues, and intimacy problems.

What causes spasticity?

                Many of our movements are controlled by the spinal cord and directed by our brain. When one sustains a catastrophic injury to the spine, the brain can no longer regulate motion and reflexes may become exaggerated over time. With a complex system of circuits that controls our body movement, the missing link between the brain and the spinal cord leaves the body with no idea how to react.  The body can no longer have quick, automatic reactions, such as jerking away from a hot object.

         Here are some common triggers that cause muscle spasms:

  • Stretching
  • Limb movement
  • Skin irritation
  • Pressure sores
  • Full bladder or UTI
  • Constipation
  • Bone fracture or tendon injury
  • Tight clothes

How can I stop muscle spasms?

The simplest road to minimizing spasticity is maintaining a healthy lifestyle and practicing self-care. It is important to maintain flexibility and range of motion to encourage movement and work toward weight bearing while standing. The next step is to wear splints and braces to promote muscle stretching and help maintain a position that does not trigger a spasm.

Oral Medication – A doctor may prescribe muscle relaxants like Benzodiazepines, Diazepam, Clonazepam, Dantrolene or Tizanidine. Some patients may be hesitant to use medication because of the side effects and success rate.

Motion blockers – If a specific body part is spasming, these injections into the muscle provide temporary relief with minimal side effects.

Surgery – Though not recommend initially, some patients opt for Intrathecal medication therapy.  The battery powered pump injects a muscle relaxant drug directly into the area around the spinal cord. Commonly referred to as a pump or baclofen pump, it needs to be replaced every 5-7 years.  Be sure to discuss the surgical risks with your doctor when weighing out your options.

Functional Electrical Stimulation – This treatment option applies small electrical pulses to paralyzed muscles to restore or improve their function. FES is commonly used for exercise, developing muscle mass, and assistance with breathing, grasping, transferring, standing and walking. Additionally, FES can help some to improve bladder function, bowel function, and reduces pressure sores.

Are there any benefits to muscle spasms?

Health professionals actually believe that a certain amount of muscle spasticity can be a good thing. Movement, even when it is uncontrolled, helps maintain muscle mass and tone. It can also help aid functional activities such as standing or transferring or getting dressed. Below are some additional benefits of muscle spasms:

  • Help indicated medical complications
  • Assist in bladder and bowel problems
  • Increase blood flow
  • Decrease the chances of blood clots
  • Help maintain bone density

With all these therapy options, be sure to communicate with your health care professional about your choices and which ones are covered by insurance. Get advice from fellow SCI patients who have experienced this and can help you make a sound decision. Muscle spasms may not be ideal, but it is good to know that there are options to help you manage the condition.

Sources

Spasticity by S. Brown

Spasticity and Spinal Cord Injury by the Department of Rehabilitation Medicine

Electrical stimulation for therapy and mobility after spinal cord injury by Centre for Neuroscience

Analysis of Spasm and Periodic Leg Movement in Spinal Cord Injury by G. Suresh

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