News
Neurotechnology: The Cutting-edge and Beyond
By Jennifer French, executive director of NeuroTech Network

Neurotechnology is the application of medical electronics with the human nervous system. These technologies can be low-tech, like surface stimulation systems, or high-tech, such as technology components decrease in size, improve capacity and gain more efficient power usage, we start to see these systems emerge as easier and more cost effective to deploy and use.

There are a variety of neurotechnologies currently available to people living with neurological diseases and disorders. There is spinal cord stimulation for those living with chronic pain, functional electrical stimulation cycling to exercise paralyzed limbs and cochlear implants allowing those that are deaf or hard of hearing to listen to the sounds of the world.

But what is coming down the pipeline of development? What new and exciting technologies will open the world up to the visually impaired or link brain waves with computer technology? Here is just a sneak peek at a few of technologies on the horizon and the impact on those who use them.

Retinal Prosthesis provides artificial vision
(Photo Courtesy of Second Sight Medical Products)
Based in Sylmar, California, Second Sight is conducing clinical trials with participants who are blind to determine the feasibility of the revolutionary Argus II Retinal Stimulation System to provide artificial vision. The system consists of a tiny camera and transmitter mounted in eyeglasses, an implanted receiver and an electrode-studded array that is implanted into the participant’s eye, along with a wireless microprocessor and battery pack worn on the belt.

The participant wears glasses with the camera, which captures an image and sends the information to the video processor. This image is converted to an electronic signal that is sent to the transmitter on the glasses. The implanted receiver wirelessly receives this data and sends the signals through a tiny cable to the electrode array, stimulating it to emit electrical pulses. The pulses stimulate responses in the retina that travel through the optic nerve to the brain, which perceives patterns of light and dark spots. Participants learn to interpret the visual patterns produced into meaningful images.

There are currently 32 participants around the world, with U.S. sites in Los Angeles, San Francisco, Dallas, New York, Philadelphia and Baltimore. They are not only using the system in the clinic but bringing it home with them to test it in a “real” environment. For instance, Dean Lloyd, a 68-year-old attorney from Palo Alto, California, who developed retinitis pigmentosa at age 24, can now see primary colors, walk along a white line and locate an object on a computer screen. "When I first got it I thought it was pretty useless," he said. "But it's getting a lot better. I can see edges and borders and boundaries. An eye looks like a star to me. I hadn't seen color for a long time. The red I see is a beautiful shade. The blue is luminescent. The green, it's just plain old green.”  To learn more about the system visit www.2-sight.com. For clinical trial information, visit www.clinicaltrials.gov, key search word Argus II.

BrainGate2 turning brain waves into action
(Photo Courtesy of BrainGate2 Study)
The BrainGate2 is a device in a growing field called brain computer interface. Currently in a human clinical trial at Massachusetts General Hospital in Boston, the ultimate goal of this system is to help people with spinal cord injury, stroke, muscular dystrophy, amyotrophic lateral sclerosis (ALS), limb loss or other conditions to restore their mobility and independence. BrainGate2 is an investigational technology being developed to detect brain signals and to use those signals to control assistive devices.

The system consists of a “sensor” (a device implanted in the brain that records signals directly related to imagined limb movement), a “decoder” (a set of computers and embedded software that turns the brain signals into a useful command for an external device) and an external device—which could be a standard computer desktop or other communication device, a powered wheelchair or a prosthetic or robotic limb. Together the system works miracles. For example, the user has a thought to move a cursor on a computer. The brain emits a signal which is captured by the implanted sensor. The sensor sends the signal to the decoder which translates it into a command for the computer to move the cursor. Preliminary results have demonstrated participants’ ability to use this investigational system to operate computer software, control robotic limbs and drive a wheelchair. For additional information about BrainGate2, including ongoing trial recruitment, visit www.braingate2.org. Inquires related to the research can be directed to clinicaltrials@braingate2.org.

These are only a taste of the exciting new technologies changing the way we live and interact with our environment. Not all technologies are appropriate for every condition. If you are considering the use of a device, we strongly recommend meeting with a trained medical professional to see if the device is appropriate for your situation. To learn more about these technologies, please visit www.NeurotechNetwork.org and go to the Education section.

Feature
Product Spotlight: Freedom 3 Bikes
Freedom Concepts Inc., manufacturer of the Freedom 3 Mobility Devices, will exhibit at all five 2010 Abilities Expos in Los Angeles, New York Metro, Chicagoland, Houston and Atlanta.

In 1995, Libby was like any other 7-year-old, happy and energetic. The only difference was that Libby was living with Cerebral Palsy. In an effort to help her child better relate to her contemporaries, Libby’s mother, Marnie, sought out Freedom Concepts to equip the girl with her first Freedom 3 bike.

“I rode this bike in the walkathon and everyone said ‘cool bike’,” Libby said at the time. “Yesterday, I rode my bike to school and everyone said, ‘Libby, you rode your bike to school’ and they said it was cool so I was real happy that everybody said that to me. That’s what I like about it.”

Her mother was moved by the opportunities that this unique mobility device offered her daughter. “I think these bikes are wonderful. They are named perfectly in that Freedom is what they give the kids,” commented Marnie. “When Libby goes out with her friends on her wheelchair, the differences between her and her friends, it’s never forgotten. On the bike, as she puts it, the other kids are jealous because it’s such a cool-looking bike. They can just take off and forget about the differences between them."

After outgrowing her first bike, Libby generously donated it to another family, providing freedom and helping to begin the CYCLE of mobility for another young rider.

Libby’s next F3 bike, an ASR 20, was “more about wanting to stay in shape” and built specifically for young adults. It helped Libby build leg muscles and increase lung capacity.

She strongly recommends these therapy bikes for other children with disabilities. In her words, “It allows you to be a kid and interact with your peers in a whole new way beyond the classroom. I remember that it made me feel really good about myself and, when other kids saw [the bike], I was often excited to talk about how great it was and was able to form new friendships."

Now in her twenties, Libby is attending community college to pursue her Para Educator Certificate and plans to work with students who have special needs. “Who knows?” she muses. “Someday I might be helping them with their first Freedom Concepts bike!”

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Survey Opportunity: Make Your Voice Heard!
Are you or a member of your household using assistive technology, such as wheelchairs, walkers, scooters, standing frames, etc.? Here’s your chance to make your opinions count!

Mobility Management, an industry publication for mobility professionals including occupational and physical therapists, is taking a survey of consumers who use mobility-related assistive technology. Your answers can help the healthcare industry to better understand and respond to your concerns, needs and wishes.

The survey should require no more than a few minutes to complete. Your opinions are critical to shaping assistive technology for the future. Thank you for making your voice heard!

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Carving Out the Best Life Possible for my Daughter with CP
By Olga L. Guerra

The mother of a child with cerebral palsy, Olga has recently joined Abilities Expo as an ambassador for the new Houston event.

My name is Olga L. Guerra and I am a parent of an 11-year-old child who has cerebral palsy. I am a very involved parent and have been advocating for Araceli since she was diagnosed at the age of six months. 

Araceli was born “normal,” but as she grew she was not meeting developmental milestones. Her pediatrician suggested we see a neurologist, so we did. Dr. Bohan diagnosed Araceli with microcephaly, but he explained that he was going to label her with CP so she could access more resources. This was Greek to me but I agreed. Little did I know that having the CP label was a good thing. As she grew, she was also diagnosed with mental retardation, speech impairment, an orthopedic impairment and a physical impairment.

As a first-time mom, it was very difficult for me to be told that the child I thought I was going to have, I was no longer going to have. I felt all the emotions that we all go through when there is a great sense of loss. But, I had to pick up the pieces and move forward because my daughter needed her mommy and, gosh darn it, she was going to have her mommy!

Thus my quest began to ensure that she would receive any and all services she needed to be successful. This also meant making sure she had devices and equipment that would assist her in being the best that she can be.

I did not think Araceli would ever walk but she had other ideas. A few years ago, she just got up and walked from one room to another. This, of course, comes because of therapy, a gait trainer, leg braces and endless doctor appointments. Araceli is non-verbal, but she does have lots of communication so I was able to get her a DynaVax MightyMo through the Specialized Telecommunications Assistance Program (STAP) in Texas. This is an augmentative communication device which allows Araceli to convey her desires. For example, when Araceli wants French fries, she can press the corresponding picture and it says, “French fries.”

She has a Tandem trike from Freedom Concepts thanks to The Heart of Variety organization. She has gone to Disney World courtesy of Make a Wish. I could go on and on but, bottom line, there are many resources, services and equipment that will help our children with challenges get that much closer to being “normal.” I tell parents all the time that all they have to do is ask. The worst thing that could happen is that the answer will be “no” and you are no worse off than when you started. What if the answer is “yes?”

I believe in allowing all children with disabilities to be the decision makers as to what they can or can‘t do. Granted, Araceli may not become a rocket scientist, but who I am I to put any limitations on her abilities?

Part of my job as her mother is to ensure that ALL doors will always be open for her. Araceli will be the only one who will decide if she can or can’t do anything.

Letter to the Editor
Flotation Devices Aid in Aquatic Therapy
Q: I’m a 70-year old former polio patient that uses a wheelchair while in the house and two leg braces and crutches when going outside for short distances. It’s been recommended that I swim 2-3 times per week. Although I’m physically able to do the breast stroke, my paralyzed left leg sinks and acts almost like an anchor. I’m looking for some type of flotation device that could be attached to my leg at the knee joint, which would keep my leg up and straight while trying to swim on my stomach. I’ve looked into the “floaties” used by children, but none of them have a large enough opening for my leg to pass through.

A: After reading your letter, I consulted the experts at the Shepherd Center in Atlanta which has a wonderful aquatic therapy program. They recommended the following items:

• The Kiefer Extremity Float (pictured at the far right) will allow you to wrap your knee and affix it with a Velcro strap. Made of EVA foam, it is available online for $4.95 plus shipping.
• The Sprint Aquatics Buoyancy Cuffs (pictured on the left) are designed to support the ankles, come in pairs and can be purchased online for $20 plus shipping.
• Sprint Aquatics also makes a Buoyancy Wrap that will add floatation to your leg. Also made of EVA foam, you can order it online for $10 plus shipping.

I hope these product suggestion are helpful and have you back in the pool in no time. Please let us know how it works out!

Feature
ADA Pioneer Justin Dart Memorialized in a Giant Hero Puppet

To commemorate the extraordinary life of Justin Dart, widely recognized as the “father of the Americans with Disabilities Act,” the Detroit-based Matrix Theatre Company is creating a giant street puppet in his likeness for use in demonstrations and parades.

The ADA became the law of the land on July 26, 1990 through the tireless efforts of trailblazers like Dart, and the puppet will ready in time to mark the 20th anniversary of this landmark legislation. The Dart puppet will make its debut during the U.S. Social Forum, an event held in Detroit on June 22-26 which brings people together to solve global and ecological crises, and will be featured in Chicago’s 7th Annual Disability Pride Parade on July 24.

The Matrix Theatre Company “uses the transformative power of theatre to change lives, build community and foster social justice,” and has a tradition of calling for a united community effort to see their puppet projects to fruition. Once the $7,500 is raised and the tribute is completed, the Dart puppet will join the Matrix ranks of puppet activists like Martin Luther King, Ceaser Chavez and Mother Jones.

"If the giant Justin Dart puppet is used to communicate his cry for everyone to 'Lead the Revolution of Individual Empowerment' particularly to youth with disabilities, it would be awesome, and extremely meaningful and valuable," said Yoshiko Dart, his wife.

Justin Whitlock Dart, Jr. was born on August 29, 1930 in Chicago. He contracted polio at the age of 18 and, as a result, spent the rest of his life in a wheelchair. Also called “the godfather of the disabilities rights movement,” Dart lead the movement for more than three decades and was a staunch advocate for human rights. In fact, his first foray into social activism was during college when he organized a pro-integration student group at the whites-only University of Houston.

He made name for himself on the national stage, receiving five presidential appointments and numerous honors including the Hubert Humphrey Award of the Leadership Conference on Civil Rights and the Presidential Medal of Freedom, the nation’s highest award that can be bestowed on a civilian. A brilliant entrepreneur, he began and ran several highly successful companies and devoted much of his wealth to further causes of social justice, calling himself “a little PAC for empowerment.”

While his personal crusade came to an end on June 21, 2002 at the age of 71 from congestive heart failure related to complications of post-polio syndrome, his legacy lives on. He left us with this challenge, “I call for solidarity among all who love justice, all who love life, to create a revolution that will empower every single human being to govern his or her life, to govern the society and to be fully productive of life quality for self and for all.”

Donations to the Justin Dart Puppet Project can be made directly through Facebook.