Donation Helps 20-Year-Old Anoxic Brain Injury Patient Become More Independent

North Port Man Who Clinically Died Now Aspires to Pursue a Nuclear Engineering Degree Thanks to the autonoME

Manny Galan was a healthy, overachieving, energetic 14-year-old whose life was forever changed in 2010 when he suddenly went into cardiac arrest while on vacation with his family. A blood clot traveled to his heart through an opening which was not previously diagnosed. As a result, Manny suffered an anoxic brain injury and was left in a persistent vegetative state. Although doctors told Manny’s mom – Millie Galan-Aguirre – that there was zero chance of him recovering, she refused to give up. Manny did not have enough brain function to qualify for rehabilitation, so Millie trained herself and started to provide him with therapy. Several months later, while in a hyperbaric oxygen chamber, Manny looked into his mom’s eyes and became responsive.

Today, Manny is still a quadriplegic and non-verbal, but he is able to walk short distances with a walker, use the bathroom, eat small amounts of pureed food, water ski with assistance and go to school. In fact, Manny graduated from high school in 2016 and aspires to attend college to study nuclear engineering. Sarasota County Schools contacted Accessibility Services, Inc. (ASI) in Homosassa, Florida to tell them about Manny and his aspirations. As a result, ASI visited Manny to conduct an evaluation and customized one of their autonoME packages – a combination of a speech-generating device and environmental control unit (ECU) – for him. The autonoME will serve as Manny’s “mobile aid”, allowing him to take notes, help him study, complete homework and access the Internet and computer programs.

“This has been a blessing in so many ways,” explains Galan-Aguirre. “I have to fight for everything I get for Manny. One Sunday I was praying because we knew how much Manny needed to get the communication device. I got a call that Wednesday to tell me that ASI was going to donate the device to Manny. I broke down in tears because my prayers were answered!”According to Brice Green, Product/Sales Manager for ASI, the company thrives on success stories like Manny’s. “We are literally delivering hope when many times, all hope has been exhausted,” explains Green. “Knowing that the autonoME will help Manny get a higher education and achieve a certain level of independence is rewarding for everyone at ASI and confirms that what we do definitely makes a difference.”

According to ASI, devices such as the autonoME are covered by the Veteran’s Administration for service related injuries and diseases such as ALS. However, they are generally not covered by private insurance, Medicaid or Medicare, making it challenging for some who need these types of devices to be able to afford them. “When a quadriplegic gains independence, their entire demeanor changes,” says Green. “The autonoME also helps alleviate stress on caregivers as well. We hope that one day private insurance, Medicaid and Medicare will realize the importance of the autonoME.” Manny’s autonoME is the second donation ASI has made this year. In March, the company donated a Grid Pad environmental control unit (ECU) to a gentleman with end stage Amyotrophic Lateral Sclerosis (ALS).“We wish we could donate autonoME’s to every person with a financial need,” says Green, “While ASI will continue to make donations as we are able, we are in the process of exploring new funding opportunities and partnerships with non-profit organizations to help make the autonoME accessible to more people who need it.” In the meantime, Green says ASI is excited to follow Manny’s progress. “We have no doubt Manny will be able to achieve his dreams,” concludes Green. “We believe his story of survival and determination will inspire others and make a difference in the lives of so many.”

Latest Report on Amyotrophic Lateral Sclerosis (ALS)

The National ALS Registry collects data on ALS to examine the incidence, prevalence and risk factors of the disease. The latest report, released just last week, indicates ALS is more common among white males and persons aged 60–69 years. There was an increase in the prevalence of ALS, jumping from an estimated 4.7 cases per 100,000 U.S. population in 2012 to 5.0 per 100,000 in 2013.  During 2010-2011, that estimate was 3.9 cases per 100,000.

View the full report:

http://www.cdc.gov/mmwr/volumes/65/ss/ss6508a1.htm

Even a slight increase is not good news when it comes to a disease as devastating as ALS.  The Veterans Administration (VA) does recognize ALS as a service connected disease.  Therefore, most veterans with ALS are eligible for VA benefits, including coverage for assistive technology such as environmental control units (ECUs), speech-generating devices (SGDs) and even our customized autonoME packages.

Accessibility Services, Inc. works with a number of individuals with ALS, including some you may recognize from previous posts and news articles:

http://asi-autonome.com/local-veteran-re-gains-freedom-through-technology/

http://asi-autonome.com/meet-beautiful-couple/

We hope and pray a cure can be discovered soon. Until then, we remain committed to improving the quality of life for individuals with ALS and other such devastating diseases. If you or someone you know has been diagnosed with ALS, please give us a call to see how we can help.

529 Able Accounts Offer New Savings Option for Individuals with Lifelong Disabilities

The 529 Able Account is a new type of tax-free savings account that will soon be available to individuals who become blind or disabled before the age of 26. The 529 Able Account was created as a result of the Achieving a Better Life Experience Act of 2014 (ABLE Act).

People with disabilities have a difficult time accruing savings and still remaining eligible for benefits such as Medicaid or Supplemental Security Income (SSI). Since funds in an individual’s 529 Able account will not count toward maximum totals, they will be in a better position to save money for the future – or use it for other necessities like healthcare and transportation – without being penalized and/or losing government assistance.

While those eligible through the Veteran’s Administration can have their autonoME devices completely covered, Medicaid and most private insurance often does not provide any financial assistance.  Could the 529 Able Account – which anyone including family and friends can contribute to – become a viable way for more people to afford assistive technology such as the autonoME and other environmental control units (ECUs) and speech generating devices (SGDs)? Sounds like we will soon find out.  If so, this is exciting news for quadriplegics and people with severe disabilities and diseases such as ALS and MS.

Read more here:

An Inspiring Note from Margarita Chapman

As a follow-up to a previous story about Eric and Margarita Chapman, we wanted to share this note from Margarita:

Meet a Beautiful Couple

A few weeks ago, a story aired on ABC Action News (WFTS) in Tampa, Florida about a gentleman named Robert McGruder and his friend, Eric Chapman.  Eric has amyotrophic lateral sclerosis (ALS).  He dreams of having a covered outdoor patio to enjoy what precious time he has left. Constructing a patio is quite costly, so Robert put some of his most prized possessions up for auction to raise money for Eric’s patio.

ABC Action News Story:

Our Program Director, Lisa Swiger, was deeply touched by this story about Eric and his friend Robert.  Although the money needed to build Eric’s patio was raised as a result of the news story, Lisa wanted to do more. ABC Action News reporter Cameron Polom was kind enough to put ASI in touch with Eric and his lovely wife, Margarita.  Last week, Lisa, along with ASI technician John Sanders, traveled to their Tampa residence to install an environmental control unit (ECU) for Eric.  The ECU – equipped with eyegaze technology so he can control the device with his eyes – will not only assist him with communicating, but Eric will now be able to turn on lights, surf the Internet and even control his television on his own.  ASI plans to also install an automatic door opener for Eric once his deck is built.

Lisa had an opportunity to spend a lot of time with Margarita.  Both Margarita and Eric are upbeat and ever so sweet.  Despite Eric’s disease, they are both still smiling and living life.  The family is on a very fixed income as Eric is unable to work and Margarita is now his full time caregiver.  Margarita indicated she attempted in the past to obtain an ECU for Eric, but kept running into obstacles.

This beautiful couple touched our hearts.  We are honored to help and be part of their lives!

What the ECU Means to Eric and Margarita – Margarita’s Words:

“With much thanks and gratitude to both Lisa and Brice at ASI for making it possible for Eric to have a fully functional device such as the ECU. This act of kindness has allowed for Eric to finally be able to check his own Facebook, send text messages, change the television channel, and soon, be able to open a door!! Amazing right? What does having the ECU bring to our life: a sense of independence, of freedom.

The moment I heard Lisa’s laughter enter my room, I knew I had to go meet the woman who owned such an innocent giggle and contagious laughter. Lisa saw the ABC Action News clip that shared Robert McGruder’s quest to build Eric a patio. She was so touched by the story that she felt she had to not only meet us in person, but to also enhance Eric’s lifestyle. She did both with pure selflessness.

I believe that the most valuable possession we humans have is TIME.

So, when Brice, Lisa, John & Gina gave 4 + hours of their day to hang with Eric & I in our home, I can happily say – We are Blessed.”

Actually, Margarita – it is we who are Blessed.  Thank you for sharing your lives and story!

 

Saving a Life – Part 2

A few weeks ago, we introduced you to a brave young man who became a quadriplegic as a result of a car accident.  Despite his paralysis, he re-learned how to play guitar and founded Music in Motion Foundation to inspire others through both music and his own testimony.

There is another young quadriplegic who is not letting paralysis get the best of him.  Twenty-nine year old Jimmy Anderson lost his parents and brother in 2010 when a drunk driver hit their vehicle.  Although Anderson survived the accident, he was left paralyzed from the chest down.  Now, four years later, he has announced plans to run for a seat in the Wisconsin Assembly:

read more

Microchip Technology Offers New Hope for Quadriplegics

Researchers at The Ohio State University Neurological Institute have successfully implanted a microchip into the motor cortex of a 24-year-old quadriplegic by the name of Ian Burkhart. This chip reads brain activity and, using a signal decoder and special sleeve, actually allows the Burkhart to control movement of his arm.

While there is still much research to be conducted, this is such encouraging news for quadriplegics! ASI’s assistive technology – including our autonoME environmental control unit (ECU) – could play an important role in integrating with these implanted microchips in the future.

When our founder, Fred Thompson, first began serving veterans and the quadriplegic community in the 1980s, this type of innovation was something only fantasized about on television and in movies. Now, it looks like what was once considered “tomorrow’s” technology is coming to fruition today.

ASI continues to stay on top of the latest research and innovations. Our autonoME ECU offers the most options and flexibility for independence than any other assistive technology on the market. Combined with microchip implants, the autonoME may one day play an integral role in making paralysis a thing of the past!

Read more about this promising microchip brain implant

Saving a Life – Part 1

We thought we would share this inspiring story of a brave young man who became a quadriplegic. A car accident stole most of his movement, but certainly not his brilliant mind:

Many quadriplegics – even those who are unable to speak – have bodies that are paralyzed, but their minds are perfectly intact.  They think, laugh, hurt, cry and have the ability to feel all of the emotions they experienced prior to their injury or illness.  It is especially important for quadriplegics to keep their mind energized, engaged and stimulated.  Ryan “Gooch” Nelson was literally “rescued” by finding a way – despite his paralysis – to perform music.

“I’ve been bruised and battered, beat up and left for dead/ I was rescued by the music living deep within my soul.” – Ryan “Gooch” Nelson

Nelson has since founded Music in Motion Foundation to inspire others through both music and his own testimony.  He turned a life changing tragedy into a triumph and is now helping others.

This serves as a gentle reminder to us all that quadriplegics are just like us.  They have goals, desires and dreams. They live, love and laugh. They also grieve, mourn and cry.

We at ASI feel blessed to be able to provide so many quadriplegics and their caregivers with the ability to become more independent.  Assistive technology – such as our autonoME environmental control unit (ECU) – has transformed the lives of so many.  We have seen cases where the face of the client we are working with lights up with excitement when we install their new ECU, only to find out later that they were once on the verge of suicide. This is exactly why we do what we do – and have been doing it for nearly three decades.   You see, at the end of the day, it’s about more than turning on a light or opening a door.  It’s about saving a life.

What a WONDERful Moment!

Every once in awhile, someone says something so profound, it becomes a moment worth repeating over and over again.

Singer-songwriter Stevie Wonder presented at the 2016 Grammy awards.  Since he is blind, he did not have the benefit of using a teleprompter when revealing the Song of the Year.  Instead, he read the name of the winner off of a card written in braille.   After opening the envelope, he joked about the audience not being able to read the card because they cannot read braille. He then made this remark before announcing the Song of the Year:

“I just want to say, before saying the winner, that we need to make every single thing accessible to every single person with a disability.”

Celebrities have much influence on popular opinion and their viewpoints have the potential to become movements.  Accessibility Services, Inc. wants to thank Mr. Wonder for standing up and speaking out on behalf of everyone who has a disability. His strength and perseverance to overcome his own disability helped him climb to the top of the music charts and become one of the most influential legends of our lifetime.

The most rewarding part of our job here at ASI is seeing the independence both our clients and caregivers experience when we install their environmental control unit (ECU). Watching a quadriplegic control his television, seeing someone with end stage ALS being able to communicate with their loved ones and witnessing a person with multiple sclerosis turn on their bedroom light for the first time in a long time is why we do what we do. Assistive technology has advanced significantly during the more than two decades we have been in business. ASI is proud to have played such a significant role is striving toward making, “every single thing accessible to every single person with a disability.”

Once again, thank you, Mr. Wonder. Your statement truly says it all!



Watch:

The autonoME in Action

Robert Oxford, a quadriplegic, finds independence through his autonoME environmental control unit (ECU).