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.
This veteran’s name and photo have been masked to protect his identity.
All too often neurological conditions are complex and there are combined conditions to treat for one person. This is a story of a veteran living with PTSD and chronic pain.
High altitude is high adrenaline for Ray, a retired Marine serving from 1997 to 2003 with two years in Iraq then Marine reserves until 2012. He was conducting reconnaissance missions that logged more than 300 jumps from airplanes at a high altitude. From that flight level, your thoughts revolve around the oxygen that you need at the time but not the real toll that jump is taking to your body upon landings. With over 560 parachute landings under his belt, Ray’s back and legs were damaged in the process. When he returned from the combat zone, he knew that he had mental health issues but pushed them aside for work. He found himself drinking and isolating himself and then turning to suicide to ease the pain. He was diagnosed with spinal disc damage and as a result lives with severe chronic pain.
It was not until 2009 did he finally seek help. The DAV (Disabled American Veterans) assisted him with his paperwork. When he finally received help, he was diagnosed with PTSD. He finds his network of fellow veterans helps him with his PTSD and he also volunteers for the veterans crisis line. In 2012, two major events happened in his life. His wife signed him up for the VA wheelchair games and after doing so she passed away. Still grieving from the loss of his wife, he attended the VA wheelchair games any way. He found that attending those games was the greatest gift his deceased wife could give him. He recognized that he is not alone and there are other veterans living with PTSD. Adaptive sports and, even more so, the competition helped him turn his life around.
But even with adaptive sports, work, and volunteer duties, Ray still deals with chronic pain on a daily basis. He finds in the evenings when things settle from the day, he slips into symptoms of PTSD and he focuses on his pain. Both make it difficult for him to sleep. He tried many different treatments but just dealt with the pain. This scenario frequently happens with people living with multiple complex conditions. Treating clinicians tend to focus on one area rather than looking at how the various conditions can mask or magnify other conditions. In Ray’s case, he tries to live with the pain while addressing the symptoms of PTSD.
A novel neuromodulation device was introduced to him as a non-invasive high-frequency surface stimulation device. He agreed to try it for three months to see how it works. After one week, his response was “this thing is amazing.” With 6 slipped disks in his back, his pain ranges from his legs, back and arms. He wears the device for 4 hours per day which happens to be the life of its rechargeable battery. “It feels like a vibration on the skin, like a deep massage,” Ray explains. The small adhesive patch with a smartwatch size processor is a wearable that recently came onto the market with FDA clearance. Ray wears it all day and can’t tell that he is wearing it. On first use, he feels pain relief within 10-15 minutes of turning the device on with a residual effect for about 24 hours. He feels like his pain levels have dropped by 20% within just one week of use. The device connects to a smartphone app allowing Ray to control the device including the levels of current going into his body with a range of 0 to 100 milliamps. He has tried TENS units before but this is nothing like a TENS. “There are no wires and it’s comfortable like a massage.” Even his mother noticed a difference in Ray, she mentioned to him that he has been able to focus more than before. With his pain reduced, Ray’s mind can now concentrate on other things other than his pain.
The atypical stoke survivor is over the age of 55. In this case, Andrew survived a stroke five decades earlier at age 15. While competing for his high school rugby team, Andrew executed a big tackle. In that maneuver, his opponent’s hipbone collided with Andrew’s face, breaking his jawbone, slicing into his carotid artery, and sending a blood clot to his brain.
It was three in the afternoon and Andrew was rushed to emergency services. He was stabilized and treated for his apparent injuries but the blood clot went undetected. Four hours after the accident, he started to feel the symptoms of a stroke. His right arm became weak. When he tried to speak to alert the medical personnel, he could only produce a few grunts and no comprehensive words. Reasoning that it was a side effect of the pain medications, Andrew went to sleep. At midnight, the blood clot released, damaging sections of Andrew’s brain and leaving him with paralysis on the right side of his body, impaired speech.
Speech therapy, physical and occupational therapies were part of his rehabilitation process. After conventional methods of therapy, he began to plateau in his progress after 18 months. While reading the newspaper, Andrew’s mother learned of a research study recruiting stroke survivors for an experimental electrical stimulation therapy. Andrew joined the trial at the Toronto Rehabilitation Institute. The device used surface stimulation along with patterned movements. For six months, Andrew and his mother drove to the laboratory for treatments. He began to see the benefits of the therapy and gained the ability to open and close his hand. Later he regained use of his arm and even the dexterity in his fingers.
Andrew is a pioneer as one of the first people to participate in this study for a novel therapy. Read more about his story and how the technology is impacting his life in the book, Bionic Pioneers.
Learn more about neurotech for stroke survivors in our directory here.
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.