Medtech in plain language
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.
Jeanne is a registered nurse and the founder of the Gastroparesis and Dysmotilities Association. She found herself with no place to turn for help when her two children developed delayed gastric emptying after drinking contaminated tap water from their local ski hill.
Skiing and vacations were soon out of the question as Jeanne’s two children settled into chronic debilitating nausea and periodic vomiting. With the formerly active children now housebound, it took two years of endless doctor appointments for the children to be correctly diagnosed with idiopathic gastroparesis. Having a diagnosis was of little help since the availability of effective treatments at the time proved minimal.
Through scientific meetings organized by the Gastroparesis and Dysmotilities Association, Jeanne met the inventor of gastric electrical stimulation (GES) therapy. The device has a humanitarian device exemption from the U.S. FDA for the treatment of nausea and vomiting related to gastroparesis. It is still an experimental treatment in adolescents under 18 years of age. At the time, Jeanne’s children were the youngest children to be implanted with GES. After being implanted with the device, life turn back to typical activities. Her daughter continued her education to pursue her dream of a Broadway musical career, while her son returned to high school to complete his degree.
Derek is not one to passively wait for spontaneous recovery. He works at it. In October 2008, his life changed from a car accident that left him with a T4-5 spinal cord injury resulting in paraplegia. As a college student, he put his studies on hold and concentrated on his rehabilitation as an inpatient at Craig Hospital in Denver, CO. After being discharged 6 months later, Derek returned to the Edwards in a Colorado mountain village, completed his college studies at Colorado University Boulder with a degree in Finance and continued with his own physical therapy and exercise routine at home to build his basic strength.
Armed with his degree and ready to launch his career, Derek returned to the Denver area. But he wanted to step up from his home routine. He returned to Craig Hospital, but not as a patient. He returned as a member of the PEAK Center. PEAK (Performance, Exercise, Attitude and Knowledge) is an adaptive health and wellness center that serves individuals with neurological conditions. Members gain access to highly trained staff, an engaging environment and cutting edge technology with a variety of membership options and specialized classes. The environment is warm. Derek describes it as a personalized setting and has built camaraderie among the other members.
When Derek joined the Center, he had an in-depth initial evaluation with a Doctor of Physical Therapy who helped him to create an individualized, activity-based programs tailored to his specific goals. Working one-on-one with his trainer, Derek trains like a machine in a technology-rich routine. Within his weekly routine, he moves from the FES cycle to the LOKOmat robotic treadmill and from the Zero Gravity trainer to the RT600 upright elliptical trainer. All of the technology used is coupled with core training exercises. Derek’s plan has resulted in improved core strength, increased balance and reduction in common complications related to spinal cord injury.
Learn more about the Craig Hospital PEAK program and the technology here.
For Consumers & Caregivers, view our free resource page for Disuse Muscle Atrophy – Exercising weak or paralyzed muscles.
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
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
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.