Editor’s Note: Jennifer French from St. Petersburg, Florida, is an incomplete quadriplegic. Thanks to advancements in assistive technology, she can stand, transfer, exercise and live independently. To promote new studies, equipment, treatments and therapies that can help people with neurological problems easier, she and her husband created the Neurotech Network in 1998. This non-profit organization is dedicated to improving the education of people with impairments and increasing their access to neurotechnology. In the years since then, Jen’s inquisitive mind has refused to accept no for an answer. She’s had the courage to try new technology, and her life has changed dramatically for the better because of it.
Jennifer’s Life Changed on a Moonlit Slope
When I was 26 years old, my boyfriend, a pilot who is now my husband, and I were living in New England. I was working for small company that just had gone public during the dotcom boom. We both had a passion for outdoor sports. I seldom got much off time. On my first weekend off after my company’s IPO (initial public offering), I went snowboarding with friends at night. My husband and I liked to canoe, kayak, fly fish, ski, mountain bike and snowboard – anything to do with outdoor sports – and still do today. We both worked and played hard.
One of my favorite things was to snowboard or snow ski by the light of a full moon. The trails glowed then, since the moonlight caused them to light up like neon – a beautiful sight. On this moonlight snowboard run on Friday evening, March 13, 1998, I was working the edge of the ski trail to dodge the icy parts of the trail. I went off a 40-feet embankment and landed in a bunch of trees. Six rescue workers and two snowmobiles were required to get me out of where I’d landed.
Later, friends told me I was conscious the entire time, however, my mind has blanked out most everything.
I only remember bits and pieces of time immediately after my crash. But I do recall looking up at the full moon, later waking up in an ambulance, hypothermic with a heating blanket over me, waking up again in the emergency room as surgeons drilled a hole in my head to put it in traction before I went into surgery and vomiting.
During recovery, I learned that my injury was at the base of my neck at the C6-7 level. I had no use of any part of my body from my neck down. When I was told I’d be paralyzed the rest of my life, I felt like I’d hit a brick wall. I was told I’d never work, and I’d never be able to do any type of recreation or walk again. They told me, “You’ll have to have assistance the rest of your life.”
My boyfriend, who is now my husband, handled my condition much better than I did. That’s probably the reason he’s my husband now.
Later, I learned that about 80 percent of the couples, whether they’re married or not, break up when one partner has a spinal cord injury. I was fortunate enough to have a very caring and understanding person stay by my side.
How She Became a Bionic Woman
At the time of my injury, people weren’t allowed to have a functional electrical stimulation (FES) cycle in their home. To ride, you put surface electrodes on your paralyzed limbs and cycled on a bike using electrode stimulation to keep your muscles and your body healthy. At that time, I realized there was no cure for my condition, and I needed to do everything I could to keep my body healthy. I appealed to my insurance company to get an FES cycling machine for my home.
While going through that process, I discovered a research group in Cleveland, Ohio, at the Cleveland FES Center and asked the group to help me appeal my case to my insurance company. The FES Center also told me about the research they were conducting, and one of the researchers said, “Hey, we’re doing some research studies. Would you be interested in participating?” After studying the center’s research, I wanted to join the research study and have an experimental stand and transfer system implanted in my body, instead of using electrodes stuck to my skin.
When I first applied for this research study, I was rejected. The clinicians said, “We’ve never implanted a woman with these electrodes.”
I wrote back and told them, “Twenty percent of the people with spinal cord injuries are women. Sooner or later you’ll have to implant a woman.” The scientists researched to determine if implanting a woman with electrodes around her stomach might have any adverse effects. Once they decided it was safe to test this new technology on a woman, I stepped up to be the first one.
Basically this device has two components – the implanted electrode and the external receiver. The internal component supplies the information to the external control system. To recover from the implant required 5 days in the hospital and another 8 weeks with minimal movement to allow the electrodes to encapsulate in my body.
Next I began a 2-month exercise protocol to build up my muscles. Then I trained with my physical therapist to learn to stand and transfer independently. After about a month of working with parallel bars and a walker, I was able to stand independently. Today, I can stand and transfer under almost any situation.
Jennifer uses this assistance device for:
- exercise to keep from getting pressure sores;
long term exercise to build up the endurance fibers in her muscles;
a back massage program;
standing and putting weight around her ankles and doing leg lifts;
exercises to build up her quadriceps and hamstrings; and
another set of exercises to exercise her trunk and stay in good shape.
The external device is small, and I can put it in a backpack and use this technology anywhere I go. I now can stand at a 7th-inning stretch in a baseball game and for a standing ovation at a concert.
Using this system, I walked down the aisle at my wedding and stood during the 20-minute ceremony. This technology has given me a tremendous amount of freedom and has allowed me to do things I never could have done without it.
Thanks to this technology:
- I haven’t had to slow my lifestyle down very much;
I’ve stayed healthy;
I’ve never had a pressure sore, although I’m 17 years post injury;
My bone density is as good as that of an able-bodied person;
I’ve enjoyed good cardiovascular and respiratory health – a big issue for people with long term spinal cord injuries; and
I can function in my home independently.
I use my system for mundane household tasks like folding laundry and washing dishes, because it gives me extra trunk control.
I went through the grieving process like everyone does when they have a spinal cord injury, and then I went through the denial process – thinking one day I’d be able-bodied again. Being able to stand up when I’m out in the community helps me mentally and socially.
I’ve used external electrical stimulation to regain the use of my hands and arms too, although my hands are somewhat impaired. Although I can’t play the piano or knit, I can type, except for using my index finger.
What’s Neurotechnology and the Neurotech Network
Neurotechnology is a broad field that encompasses many new technical devices from cochlear implants to help restore hearing to the deaf, neural prosthesis to provide movement to the paralyzed, deep brain stimulation to suppress tremors associated with Parkinson’s disease and spine stimulators to give relief to those with chronic pain.
About 90 to 95 percent of the new businesses in this interest area are spawned from university research. The Neurotech Network reaches out to inform consumers about new devices being built and those about to come to the marketplace. We also keep people up to date on the latest clinical trials.
In 2013, the United States signed onto what is now known as The Brain Initiative, which made funding available to study the human brain and to develop new devices to help people with brain impairments. Many new treatments, therapies and devices have been developed that often people don’t know are available. Our Network attempts to keep them informed on this information.
As a non-profit organization, the Neurotech Network doesn’t recommend or sell any of the new technology that we discuss on our webpage, and we’re not a medical facility.
The purpose of our website is to communicate to the general public what’s available, and what research is being conducted to improve people’s lives through technology for specific types of injuries. After going to several National Institutes of Health conferences, meeting people with various neurological conditions and learning about different new devices that people were using, I asked, “How did you learn about this new technology?” Most of the people told me that finding the information on the new technology wasn’t easy.
That’s when we decided to start a non-profit organization to be an information resource for people searching for new developments and new technology that might could improve their conditions. On our site, we also answer questions and try to direct people to people who can answer their questions about technology that may benefit them.
We invite people, who have medical conditions that technology may be able to help, to come to our webpage – caregivers, clinicians and anyone else interested in assistive technology. We provide resources for free. Our primary goal is to let people know what’s available that can enable them to live better and more functional lives.
Some of the free educational fact sheets we offer at www.neurotechnetwork.org/factsheet.html include information on: ALS; bladder, urinary and bowel management and control systems; blindness; brain computer and machine interfaces; brain injuries; cerebral palsy; exoskeleton and robotics; FES; multiple sclerosis; pain and spasticity management systems; Parkinson’s disease; respiratory assistance; sleep monitoring and diagnostics; spinal cord injuries; and strokes.
Exciting New Opportunities in Neurotechnology
I’m the founder of the Neurotech Network and also the senior editor for the “Neurotech Report” for the industry. Also, I’m the founder of the Warrior Sailing Program that introduces our military, both active and retired who have disabilities, to the sports of sailing and sailboat racing.
I’ve written two books: “On My Feet Again”, my personal story about joining the clinical trial; and “Bionic Pioneers”, the stories of 10 brave individuals with a variety of neurological conditions who have used neurotechnology to change their lives. For instance, one of the stories is about a young woman in her teens who had epilepsy, and she uses a Vagus Nerve Stimulation (VNS) to control her epilepsy.
Another story tells about a lady implanted with a brain computer interface after having a brain stem stroke at age 43 that caused her to be locked within her body, yet with her mind fully functional. She only could communicate by blinking her eyes.
This technology uses a 100 array electrode that’s implanted into the motor cortex of the brain. The electrode, the size of your fingernail’s pinky finger, connects to a computer with algorithms that’s connected to a robotic arm to control a wheelchair or type a message. The electrode actually senses your action potential in the brain and goes from the brain into the electrode and from the electrode into the computer.
The computer decodes what the brain is saying to the electrodes and turns that thought process into an action. For instance, if a person has one of these devices implanted into his or her brain and thinks about picking up an object off the floor, the robotic arm will pick up that object. None of these brain computer interfaces are commercially available yet.
An entire page developed on our website is specifically targeted toward people with spinal cord injuries. We worked with the United Spinal Association to create this multipage resource on various categories of spinal cord injuries, the new technology being developed to help people with spinal cord injuries and the products available to assist people with spinal cord injuries. There are exciting categories on breathing systems that help restore breathing for people who are ventilator dependent and numbers of upper extremity devices that can be implanted to use externally to regain function and/or to accelerate therapy.
The website also has a section on neurological pain and spasticity, including the latest technology on bladder and bowel control.
A few new devices can be implanted in the body, as well as some external devices for people with incomplete spinal cord injuries. There are devices available for restoring sexual function and aiding ambulatory walking and standing and a drop foot stimulator that enables someone to lift his or her foot as he walks – a big problem for people with incomplete spinal cord injuries. The Exoskeleton is an emerging type of technology too.
New developments have been made in exercise systems that help to combat the secondary conditions that come from spinal cord injuries. Our website also features some alternative therapies like Vagus nerve stimulation and EEG and PMS therapies that have been approved for depression. Other new devices allow people to communicate who are locked in and can’t currently communicate. Our organization tries to keep up with the latest technology, devices, treatment and therapies being developed, and we try to mainstream that information to the people who need it the most.
More Fundraising Help from Wheel:Life
In this book, you’ll review 10 brainstorming ideas for different types of fundraiser events to benefit an individual with a disability who needs assistance for medical equipment, physical rehabilitation, adaptive sports equipment or daily medical needs.
Throughout the book, author Lisa Wells shares real-life examples and success stories from her interactions with disability advocates, non-profit supporters and Wheel:Life members throughout a healthcare marketing career that spans more than 20 years on three continents.
10 Fundraising Ideas to Help People with Disabilities features interviews from:
• Paralympian Bert Burns on how he raised support to begin his career in wheelchair racing
• Project Walk Atlanta participant Leslie Ostrander on how she raised money for additional rehab
• The founders of 100 Songs for Kids on their annual music event to benefit children’s medical charities
• Rolling Inspiration creator Chris Salas on how he lined up sponsors for his SCI peer support group
and power soccer team
• The creators of Hunter’s Torch Daylily Garden, a fundraising resource for a child with special needs.
• The Independence Fund – a little known source of financial support for disabled US veterans.
About the Author: John E. Phillips
For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites.
He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at www.johninthewild.com.
More Clinical Resources: Free Nurse CEUs
Wheel:Life loves all of the nurses and medical professionals that support our online community!
That’s why we’ve partnered with LoveYourNurse.com to offer a series of FREE continuing education courses for clinicians. LoveYourNurse courses are fully accredited, and easy to follow online. All you have to do is create an account and then login to access the course library! You can take tests at your convenience after you review the course material online.