Real Stories

Read Real Stories from people living with neurological diseases and disorders and how neurotechnology has impacted their lives.

So much can be learned by sharing stories. Below are experiences from people who use neurotechnology devices. Click on the list below to get to the stories related to that specific field or just scroll down to view all of them.

Hearing Loss - Cochlear Implant

Arlene Romoff began losing her hearing during her college years. It continued to decline gradually until, almost thirty years later, she was left profoundly deaf. When hearing aids no longer worked for her, she elected to get a cochlear implant, a computerized device that stimulates the auditory nerve directly. In March 2008, her 10-year-old cochlear implant internal component failed. She had surgery to remove the old component and insert a new state-of-the-art component into her cochlea. Now, she has a new external processor as well - and new software. Being thoroughly modern and bionic, the new technology is even better than the old.  With just a few weeks' experience, Arlene is already doing better in noise, with music and in general. "It's still not completely "normal" hearing, but incredibly good." She has now received an implant for the other ear and became bilateral, which enhances hearing in noise and directionality. Learn more about Arlene in her book �HEAR AGAIN� by clicking here HEAR AGAIN.

Dr. Michael Chorost in an internationally known authority 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 by clicking here.

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Bladder Control

Amanda Boxtel is the Co-founder of Challenge Aspen, the Director of Special Projects and a motivational speaker. She is also an FES system user of the Vocare Bladder system. On February 27, 1992 her life took a dramatic turn around and her dance on wheels began. It happened in a split second whilst downhill skiing� a freak somersault which bruised her spinal cord and shattered her eleventh and twelfth thoracic vertebrae, leaving her paralyzed from the hips down with no sensation. She now travels the world to assist in establishing adaptive ski programs in places such as Akureyri, Iceland, Portillo, Chile, and Bariloche, Argentina. As a motivational speaker, she addresses large and small audiences in the community and private corporations and organizations. She has appeared in both local and national media outlet. She also serves on the Board of Directors for Challenge Aspen and the Expect A Miracle Now Foundation. As a native Australian, she calls Aspen, Colorado her home. Learn more about Amanda by clicking here.

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Breathing Assistance - Diaphragm Pacer

Don Pollard was injured in an automobile accident at the age of 18 months. This resulted in an incomplete injury to his brain stem and a classification of being a quadriplegic. Fast forward to 2007 when Don was implanted with the diaphragm pacing device. It has greatly influenced his life. First and foremost it has improved his independence immensely by not requiring a person to be with him all the time and everywhere he goes in case of emergency. Also, he feels that it has improved his health by simply allowing him to breathe like everyone else instead of being dependent on a mechanical ventilator. As far as quality of life, it has improved that as well by allowing him to gain independence away from battery problems that occurred with the ventilator. He remembers on many occasions having to interrupt an outing to find a plug-in or even having to go back home because of batteries running out or other things happening to the ventilator. Lastly, it has allowed him to have more independence in his wheelchair by taking away from the size of the chair. This has made accessibility issues easier and will open his options to different and more efficient styles of wheelchairs in the future. To learn more about Don’s experience, Send him an email.

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Breathing Assistance - Diaphragm Pacer
On June 24, 2002, I was injured an became a C3 tetraplegic. Implanted almost one year to the date of my accident, I was the fourth recipient of the diaphragm pacer for breathing assistance. I have been off the ventilator 24 hours a day seven days a week ever since. It has been a true blessing. Unlike the phrenic nerve pacer, this procedure is very minimally invasive, and completely done on an outpatient basis. The surgery takes only about two hours. The diaphragm pacer consists of five hair thin wires. Four that go from the chest down into the diaphragm. With two electrodes being attached at phrenic nerve motor points in each diaphragm. The fifth wire being an anode (a ground wire). The wires are then through a connector on the chest connected 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. Contact Laszlo to ask him about his experience with a diaphragm pacer.

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Chronic Nausea & Vomiting - Gastroparesis
Jeanne Keith-Ferris, RN, founder of the Gastroparesis and Dysmotilities Association, 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 children, Jenn and Thomas, 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 proved minimal. Through scientific meetings organized by the Gastroparesis and Dysmotilities Association, Jeanne met the inventor of gastric electrical stimulation (GES) therapy. Not yet fully FDA approved for the treatment of nausea and vomiting related to gastroparesis, GES does have a humanitarian device exemption. It is still an experimental treatment in adolescents under 18 years of age. In 2004, Jeanne's children were the youngest children to be implanted with GES. Today Jenn is studying theater arts in New York pursuing her dream of a Broadway musical career, while Thomas is able to complete his high school studies, all thanks to their implanted devices. Contact Jeanne to learn more about her association and her experience with GES.

Chronic Nausea & Vomiting - Gastroparesis
Be proactive about your health is the advice from Loretta. This proactive drive is how she discovered the gastric electrical stimulator that changed her life. Nearly two years ago, symptoms of gastroparesis afflicted Loretta after undergoing surgery for the treatment of thyroid cancer. With chronic vomiting, loss of energy and tooth decay from the stomach acid, she under went a battery of tests. Her diagnosis was not delivered until she had a stomach emptying test. Being a type two diabetic and in her sixties, the oral medications to treat the symptoms of gastroparesis did not agree with her body. As a minister�s wife, her life was turned upside down; unable to partake in the social joys of her role. Knowing Loretta could not live with the symptoms, she turned to the internet as a research tool to learn about treatments such as the gastric electrical stimulator. Six months after her discovery and meeting physicians, she was implanted with the device. It was not an immediate change for her. Along with using the device, she adjusted her eating habits and observed her body functions beginning to regulate. After four months using the device, she realizes that this is not a cure for the disease but her life is back to normal again. Ask Loretta questions about her experience with the gastric electric stimulator by clicking here.

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Obsessive Compulsive Disorder (OCD)
For over 10 years, Gerry Radano's daily prayer was "Please God let me die today." This ominous request was due to the fact that Gerry suffered from Obsessive Compulsive Disorder (OCD), a neurological brain disease that affects nearly seven million Americans. Her storybook life as a flight attendant, an accomplished real estate entrpreneur, and happily married mother of two was interrupted overnight by OCD. Gerry was in three psychiatric hospitals, tried every OCD medication on the market, had countless hours of therapy, lost her career, and nearly lost her marriage. Desperate for relief, she underwent an experimental brain procedure known as Gamma Knife Surgery. This operation, her relentless determination and unwavering faith pulled her thru. Today, all of her OCD symptoms are gone. She has written a book, Contaminated, My Journey Out of Obsessive Compulsive Disorder to show how OCD took her mind, but not her spirit. Learn more about Gerry Radano and her book by clicking here.

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Stand and Transfer
My name is Dale and I am a T6 paraplegic. My injury was on September 9th.1998. While I was working as a atmospheric condensation redistribution engineer (gutter installer) I was hit by a high tension wire (7,620 volts). I was on a ladder at the time and fell about 30 feet crushing my spinal cord from T6 to T11. My injury is complete and the doctors say I will never walk again, but with God all things are possible. As you can see, my faith in the Lord Jesus Christ is the only thing besides my wife and family that gets me through every day. I now have the FES system in my body and am able to stand and walk on a walker every day if I choose to. The system keeps my muscles in tone and helps with UTI's, bone density and other problems that are common in people that have to be in wheelchairs all day long. I would recommend it for everyone that is able to have this system. God Bless and do not give up the fight to live a healthy life. There are many things around that can help you achieve as normal a life as you can have. Email Dale (kmorre31@sbcglobal.net)

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Walking and Gait
This is Pat who suffered a stroke 7 years ago. Through rehabilitation and faith I regained limited use of my right hand and some mobility. I progressed from a wheelchair, to a walker, to a cane and AFO, but it was difficult to walk. I could only wear my AFO for short periods at a time due to sensitivity in my foot, and then I HAD TO GET IT OFF!! Walking any distance was a chore, and because of the way I compensated (swung my hip) fatigue was a factor. The right side of my body was dead weight. And I had occasional falls, one that left permanent damage to my left eye. In July 2007, I started using the NESS L300� , a drop foot stimulation system from Bioness Inc. My life has changed dramatically. I walk more normally, I no longer fall and I am free from my AFO! I am mobile again and my fatigue is dramatically reduced! I shop, go to soccer games, have strolled along the sea shore, even tried dancing. And I achieved my main goal--to walk out into the field and catch my horse! But the amazing thing is that I am now aware of my right side! It has become a part of me again. The system has given me back mobility and freedom that I thought I had lost forever! Email Pat

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Hand Grasp - Implanted system
After receiving an implantable hand grasp Functional Electrical Stimulator (FES) system in September 1996, Darrell Hover has been using his system regularly. As a C5-6 quadriplegic from an All Terrain Vehicle (ATV) accident in October 1994, he had limited use of his hands prior to surgery. Now, this Mississippi resident has four different grasps that he uses to increase his independence. The first grasp is a lateral position, which allows him to pick up an electric razor and shave or to brush his teeth. Grasp number two is a palmer position, which allows him to pick up a glass or coke can. The third grasp is Darrell's sandwich grasp, which is similar to the first grasp but softer so he would stop putting holes in his sandwiches. Finally, grasp four extends his index finger, so it could be used to type on a keyboard. As an added benefit the FES system helps to decrease muscle atrophy. These may sound as though it's no big deal, but every step towards becoming more independent is a giant step in the life of a quadriplegic. Read more about Darrell�s FES experience on his website at Darrell's Website or contact him directly at Email Darrell

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Hand Grasp - Implanted system
As an avid long distance cyclist, Maria was finishing a 40 mile ride one morning in the Bronx, New York when she was struck from behind by a car. That day she didn't get off her bike achy and sore yet exhilarated by her accomplishment; instead she got off her bike with a C5-6 spinal cord injury. Life in New York as an architect was thrown into upheaval; after months in the hospital she found herself back in Ohio struggling just to turn on a computer. In March 2007, she received an implanted FES hand system through the Cleveland FES Center, providing use of her left hand that was paralyzed as a result of the injury. Since then her self reliance has grown. She no longer carries around special silverware when going to restaurants because she can manipulate whatever is provided, even plastic. "I never really expected that I would pluck my own eyebrows again, but I am quickly becoming a pro." She is now actively working toward a graduate degree in preparation for a new career as a professor. As a result of using the hand system, she unexpectedly found an outdoor activity, tennis. By firmly grasping the racquet using her device, she can hit the ball hard enough sending it over the net! Click here to contact Maria to inquire about her experiences with the implanted hand system or to offer tennis tips.

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Hand Grasp - External FES system
Hi, my name is Kathy. I am a wife to my husband Mike, a mother to my two boys, Chris and Joe. I had my stroke four years ago when I was 49 years old. The stroke affected the whole right side of my body. I was told that most of my recovery would come within the first year. That hasn't been true. I'm still making progress today. At first, my speech and walking got better, but not my arm. Then a friend of ours gave my husband a brochure about the NESS H200�, a hand rehabilitation system using FES from Bioness, Inc. Mike and I decided to look into it. My husband has been wonderful; he has helped me explore every possible way to get well. I have been using the system. since January of 2007. What kind of changes have I seen? I can lift and bend my arm, reach to the back, and there is movement in my fingers. I can use my arm to carry large things, I can dress myself and hug my children.
Email Kathy