Giving Jan a voice: Thinking cap for ALS

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DURHAM, N.C. (Ivanhoe Newswire) – Letters flash across the screen. Using only her mind, Jan Freeman will focus on them to form a message.

For Freeman, it’s a new way to communicate. Like others diagnosed with ALS, she lost her ability to speak and will eventually lose her ability to move, even as her mind remains active. For now, she uses her phone to talk.

“I am excited about the research being done here at Duke,” Freeman told Ivanhoe.

Richard Bedlack. MD, PhD, Director of the Duke ALS Clinic, and Section Chief of Durham VAMC Neurology, says the new brain computer interface (BCI) is a way to give ALS patients the ability to connect with those around them.

“I always get the goose bumps when we find something new here that can give people back what this disease has taken away from them,” Dr. Bedlack told Ivanhoe.

The BCI uses a “thinking cap” with electrodes. When Freeman concentrates on a letter she wants, an electrical spike tells the system what it is.

“[In the future] a person may eventually be able to spell, surf the internet, or play games with their family with no movement left whatsoever,” Dr. Bedlack said.

The new system is being used for research now, but could be commercially available in several years. It could also one day be used by those locked-in by strokes or cerebral palsy.

For now, Freeman remains grateful.

“I truly know that each day is gift and I am thankful to have this time with my family and grandchildren,” she said.

BACKGROUND: Amyotrophic lateral disease (ALS) is a neurodegenerative disease that affects nerve cells in the spinal cord and brain. Often known as Lou Gehrig’s disease, this deadly disease affects the motor neurons, which is related to the brain’s ability to control muscle movement. ALS usually leads to involuntary muscle action, leaving patients paralyzed during late stages of the disease. (Source: and

SYMPTOMS: Early signs of ALS include trouble with speech, swallowing, muscle weakness, muscle cramps, and eventually trouble breathing. The disease will usually begin in the hands, feet, or limbs; then, it will spread to other regions of the body. Once the disease begins to spread, the muscles weaken until they become paralyzed. (Source:

TREATMENT: There are various forms of treatment available for ALS patients, depending on how severe the patient’s symptoms are. There is not a cure for this disease, but medicine, physical therapy, occupational therapy, and speech therapy can aid in the relief of symptoms. Some medicines can slow down the disease and weaken symptoms, while therapy can provide exercises to improve mobility, muscle strength, and communication. (Source:

NEW TECHNOLOGY: Researchers at the Duke ALS Clinic are now using a brain-computer interface in order to help patients who have been immobilized by ALS. Wearing a “thinking cap,” a cap with various electrodes monitoring brain activity, patients can simply look at a letter on a screen and make it form a word. The computer is designed to recognize a specific type of brainwave, called a P300. The P300 is a brainwave that only occurs when you see something you are particularly interested in. The computer can recognize a P300 when you see a letter that is part of a word you are trying to spell, and from there will determine which words are made up of those letters. In the future researchers hope to be able to use the system to help patients perform a variety of activities, from simply speaking to surfing the web. (Source: Dr. Richard Bedlack)

Richard Bedlack, M.D., Ph.D., Director of the Duke ALS Clinic, and Section Chief, Durham VAMC Neurology, talks about a new device that could help patients with ALS.

What is ALS?

Dr. Bedlack: ALS stands for amyotrophic lateral sclerosis, it’s also known as Lou Gehrig’s disease. It’s a degenerative disease of motor neurons. Motor neurons are kind of like the wires that connect the front part of your brain where you make decisions to the muscles that actually carryout the actions. As those cells die, people gradually lose the ability to control their muscles. So a typical person with ALS will have the disease start in an arm or leg and they will notice a little bit of painless weakness there. Many times they’ll try to ignore it, hope it will go away, but unfortunately with ALS, it keeps getting worse. And eventually a person with ALS will lose the ability to walk, or to move their arms, so they won’t be able to feed, to dress themselves, or us the toilet by themselves. They will lose the ability to speak, to swallow, and eventually to breathe and unfortunately most people with ALS have to make some very difficult decisions about whether they want to use aggressive means to stay alive like mechanical ventilators within about three years of their first symptoms.

What kind of research are you doing at Duke?

Dr. Bedlack: We’re doing all kinds of research here. We’re doing research to try to understand why this happens to people. A few years ago, we had no idea, and then we learned that some of it is genetic. We thought that was very rare, like less than 5 percent of patients and now that we’ve got all of this new technology, we’re learning that genetic ALS, which is ALS that’s caused by an abnormal gene that you’re born with, probably happens in about 10 to 15 percent of people. So it’s much more common than we used to think. But still, the great majority of ALS remains unexplained. We’ve got studies underway to try to figure out what we can do to give people back some of the functions that they’re losing and that’s kind of what you’re here about today. One of the most frustrating parts of ALS is losing the ability to communicate and that’s really part of what makes us human. We are hoping that we’ll be able to sort of reengage and reconnect people with their loved ones.

That’s the ultimate goal of the research?

Dr. Bedlack: I mean, the ultimate goal would be the to cure ALS. But in the meantime, we want to try to give people back as many of the things ALS has taken away from them as we possibly can.

Can you just briefly tell us how the brain-computer interface device works?

Dr. Bedlack: This particular device is looking for a specific brainwave called the P300, and which is one of several different visual evoked potentials. Let me explain what that means. If I start to show you things in front of your eyes, and I have electrodes taped to your head, there are going to be certain brainwaves that occur as a result of those visual stimuli. The images hit the back of your eye and get converted to electrical activity which travels down the optic nerve and back into different regions of the brain, like the occipital lobes, for example. We can measure electrical signals along each of those pathways: the retina, the optic nerve, the occipital cortex. Those are what are called visual evoked potential; the electrical signals that come from the image traveling through those areas. Now, there is one special electrical signal called the P300 and for reasons we don’t fully understand that only appears when you see something that you’re particularly interested in. So say you were hungry right now and couldn’t tell me. And I started to flash a series of words in front of you. The words that are associated with food and hunger would be of interest to you and so if you saw those words, you’d get a P300, but all the other words in the English language, wouldn’t have that particular visually evoked potential. So to take a step further back, because we can’t flash every known word in front of you, we flash the letters and when you see letters associated with a particular word that you’re trying to spell, you get a P300. So in this case, the letters would be food. Now they wouldn’t necessarily appear in order right away, but once we know what letters you are trying to communicate, then we can start to zero in on what words have those letters and start to show a limited number of words and eventually get a P300 from a specific word.

So the implications for the research are huge?

Dr. Bedlack: I always get goose bumps when we find something new here that can give people back something that this disease has taken away from them.

Anything else that you would like to say about the current research, where it’s going, and what the next step is for it?

Dr. Bedlack: People sometimes ask, ‘how do you stay in this field? It’s such a terrible disease and all your patients get worse and die no matter what you do.’ Well that’s one way to look at it, but another way to look at it is when we opened the clinic 15 years ago, we had absolutely nothing to offer people with ALS. We really didn’t know what caused any case of ALS, we really had no medicine to offer for people with ALS, we had no equipment to offer people with ALS; we knew absolutely nothing. And now here we are 15 years later and a typical person with ALS comes to our clinic every three months and spends five or six hours with us getting gone over from head to toe and every single problem that person has, we’ve got options for. We don’t have a cure yet, but we’ve got options for things that can compensate for what the disease has taken away. This BCI device is just one of many different things that we can offer now.