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Giving Jan a Voice: Thinking Cap for ALS

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.
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 said.

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 said.

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: http://www.alsa.org/about-als/what-is-als.html and http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359)

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: http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359/DSECTION=symptoms)

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: http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis)

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)

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