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Kim O.

Kim O with a retinal prosthesis

Retinal Prosthesis

Bringing a baby into the world is a moment many parents relish. It is a time when your life changes with the addition of a new baby. For Kim and, her husband, Sean, their life changes were intensified. After the birth of their second daughter, Kim’s vision began to rapidly deteriorate. At age 12, Kim was diagnosed with retinitis pigmentosa with a macular edema.  Sixteen years later, she was registered legally blind with 80% vision loss. While celebrating the joy of a newborn baby at age 30, Kim had post-natal depression but it was amplified by her grieving the loss of her own vision, which had progressed to only tunnel vision.

The disease progression accelerated. Eighteen months after the birth of their second daughter, Kim retained some light perception but nothing else. Parenting two young daughters is not an easy duty but imagine trying do to so as a visually impaired parent.  With her new condition, Kim found herself relying more on her husband to care for the children. She found it difficult not being able to give her children what other mothers were able to do so easily. Over time, they learned to adapt to a new way of parenting and Kim began to use more advanced planning to get their daughters to their various activities.

While listening to the news, Kim heard a story about an experimental technology to help restore vision for people living with retinitis pigmentosa. The news story described a retinal prosthesis system, the Argus® II, and the clinical study involving the implantation of components into people living with blindness. The study was recruiting new candidates at the time. Sparking her interest, Kim thought, “This is amazing, especially if I can do that.”

Kim is a pioneer as one of the first people to receive the retinal neural prosthetic to restore vision. Read more about her story and how the technology is impacting her life in the book, Bionic Pioneers.

Learn more about neurotech for visual impairment in our directory here

Laszlo N.

Diagphragm Pacing Technology

On June 24, 2002, LaszLo was injured and became a C3 tetraplegic. Implanted almost one year to the date of his accident, he was the fourth recipient of the diaphragm pacer for breathing assistance. Laszlo has been off the ventilator 24 hours a day, seven days per week ever since he received the system. He described it as ‘a true blessing’. The surgical procedure to implant the system is considered minimally invasive, and done on an outpatient basis. His surgery took about two hours. The diaphragm pacer consists of five hair thin wires; four that go from the chest down into the diaphragm with the fifth being an anode or ground wire. There are two electrodes attached at phrenic nerve motor points in each diaphragm. The wires are then tunneled through a connector on the chest going directly to the diaphragm pacer. It is a hardwired system. There is no transmitter. The electrodes contract and relax the diaphragm muscle used for breathing, independent of a typical ventilator system.

More information is available on in the Respiratory Disorders directory

Michael C.

Cochlear Implant technology

Dr. Michael Chorost is an internationally known author on cochlear implants and social issues raised by advances in medical technology. He was born with severe hearing losses in both ears due to an epidemic of rubella. He did not learn to talk until he began to use hearing aids at age 3 1/2; which enabled him to grow up speaking English. In July 2001, he lost the remaining hearing in his one usable ear and got a cochlear implant shortly afterwards. This experience is chronicled in his book, Rebuilt: How Becoming Part Computer Made Me More Human. He is now “Living in Stereo” when he received a second cochlear implant and now hears using two implants, one for each ear. Learn more about Dr. Chorost and his book.

Real Stories of Bionic Pioneers

Meet the people behind the technology. There is no glamour or showcase. This is simply the stories of real people living with neurological conditions who have found the use of neurotechnology to impact their lives.

These posts bring the technology to life and feature how this evolving technology can change the lives of average people.