By the time my daughter, Kimbi, was 4, she had already lost the ability to walk, talk, swallow and even lift her head. She could still move her hands and fingers, and her classroom aides tried to get her to hit a button connected to a speaking device so she could tell them what she needed. It was trial and error, and I felt we were missing so many things that her bright eyes told me she wanted to say.
When she was about 10, I heard of a computer with an eye gaze system that worked by using the eyes to follow dots on a computer screen. It sounded promising, so we found one at a school and they let us use it to see if it worked for her as it cost some exorbitant amount to purchase one. I worked with Kimbi three times a week, trying to help her master the technique.
At first Kimbi was excited and tried very hard, but the difficulty soon wore her out. She became defeated. Then, she refused to try. The idea of the device was good, but the technology hadn’t advanced enough for someone with her level of disability.
About that same time, I read a newspaper article about a research group working with monkeys on a similar concept. The scientists were trying to figure out how to have the monkeys move objects by simply thinking about them.
I was fascinated. It gave me hope that someday there might be a device that Kimbi could operate in the same way. Her mind was not the problem. But I had no idea how long it would take to achieve substantial progress—or even if it would happen in my lifetime.
Now it is 16 years later, and I’ve been following that group’s work all these years. They have made amazing strides and have a human clinical trial in progress to see if the device is safe and effective. Last year, they were on 60 Minutes. It featured a paralyzed woman who was able to pick up a cup of coffee by using her thoughts. She could also operate a cursor on a computer, opening up her world in so many ways.
The research group is BrainGate at Brown University in Providence, R.I. I’m excited to report that Dr. Beata Jarosiewicz spoke at our family conference in April. When sharing with her why I wanted her to come speak to our group, I explained to her how exciting this was and how it gives hope to families and individuals that communication and quality of life could be improved in ways that were unimaginable just a short time ago.
Dr. Jarosiewicz shared with us how her team is developing a device that decodes activity in the brain when a person intends to move an object.
The goal of the research is to allow people who are paralyzed or have severe movement disabilities to control a cursor on a computer screen or other prosthetic device simply by imagining movements of their own arm. This has the potential to restore independence and improve quality of life for people with these disabilities.
Who knows? Maybe one day my daughter and other NBIA individuals will be moving a cursor on a computer and communicating with us in ways that just aren’t possible today. It is truly mind boggling to me how fast technology is moving and how much progress researchers are making in so many different areas of science.
If you’d like to view a short 60 Minutes clip on this work – go to http://cnettv.cnet.com/60-minutes-braingate-movement-controlled-mind/9742-1_53-50004319.html
Welcome to Brain Iron Matters, the official blog for NBIA Disorders Association. Our board of trustees, Scientific & Medical Advisory Board, staff and invited guests will share information of interest to our community.