Frederick, MD -- Twenty-two-old Claire Menke has an indomitable spirit. Her courage and stamina astounds everyone who knows her, including her family.
Menke has a compelling story to tell. What makes her story so compelling? The 22-year-old Menke has amyotrophic lateral sclerosis (ALS). ALS is a disease of parts of the nervous system that control voluntary muscle movement. In ALS, nerve cells that control muscle cells are gradually lost. As these motor neurons are lost, the muscles they control become weak and nonfunctional.
Amyotrophic comes from the Greek roots meaning without nourishment to muscles and refers to signals nerve cells normally sent to muscles cells. Lateral means to the side and refers to the location of the damage in the spinal cord. Sclerosis means hardened and refers to the hardened nature of the spinal cord.
ALS has lived up to its definition when talking about Menke, It has her robbed her of all mobility and other activities. She can’t walk, speak and write. The only muscle Claire controls is a muscle above her right eye.
Menke is totally dependent on her mother, Daean (de ean) who dresses her, bathes her, feeds her, and addresses her other needs. Despite the Herculean barriers confronting her, Menke found a way to communicate to her family and friends. Her speech therapist discovered the NeuroNode, an assistive technology device that hurdles her barriers and gives her the voice and other tools she needs to reconnect with her family and friends.
The NeuroNode is a small, non-invasive, wearable EMG assistive technology device. The NeuroNode’s wireless sensor is placed on the skin over the muscle chosen to be the switch. When the muscle is moved, the NeuroNode detects the user’s bioelectrical (EMG) signals, and uses these signals to allow users to control a computer, tablet, or cellular device.
The NeuroNode is the brainchild of Control Bionics, an Australian company started by Peter Ford, an Australian CEO, software developer, author, former journalist and news anchor.He is the founder and Chairman of Control Bionics, a neural systems technology company, and the inventor of NeuroSwitch, an EMG (electromyograph) based communications and control system for people with profound disabilities including Locked in Syndrome. NeuroSwitch Liberator enables a person with quadriplegia and loss of speech to control a computer, communicate with text and text-to-speech (TTS) and control environmental systems, television, video, music and other personal media, internet access, emails, games and SMS (mobile texting).
Ford says this about Menke and the NeuroNode, “We developed the NeuroNode so that Menke and others with ALS and other neurological diseases could maintain a sense of independence an accomplishment as the diseases progresses. There is a positive synergy between Menke and the NeuroNode.”
Assistive technology is defined as "any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a person with a disability.”
Through the NeuroNode, Menke is reconnecting with her family. She is turning science fiction into reality. She is responding to questions from her older sisters, Emily and Amanda and her younger brother Alexander.
The NeuroNode is attached to a muscle above Menke’s right eye. The NeuroNode is a small, non-invasive, wearable EMG assistive technology device. The NeuroNode wireless sensor is placed on the skin over the muscle chosen to be the switch. When the muscle is moved, the NeuroNode detects the user’s bioelectrical (EMG) signals, and uses these signals to allow users to control a computer, tablet, or cellular device.
Every day since the age of 6, Claire has been challenged by a neuromuscular disease. When she was 9-years old, her parents Daean and Jay were told that Claire had an undiagnosed neuromuscular disease. Some years later, after participating in a study at the National Institute of Health her disease was diagnosed; Claire has amyotrophic lateral sclerosis.
In March 2017, a major catastrophe struck Menke. She stopped breathing. An unconscious Claire was rushed to the hospital. She was in a coma for a week. When she came out of the coma, she had lost her ability to speak.
The Menke family was shocked and saddened, but they were not going to abandon Claire, and they were sure Claire was not going to give up on them. They found a speech therapist to teach Claire how to use communication boards. Further searching by the therapist found the NeuroNode.
The only eye muscle Menke can use is a muscle above her right eyebrow. The NeuroNode is connected to this muscle. Using the NeuroNode Claire responds to yes and no questions. Using the NeuroNode Menke has regained the ability to write and speak.
Recently a pastor visited Claire. She was using the NeuroNode when he asked her, “How are you feeling today.”
Using the NeuroNode, she responded “sad.”
The pastor and Daean were surprised by her response.
Once Menke is seated in her wheelchair, she uses the NueroNode six-to-eight hours daily. What does Menke use it for?
Daean says, “Claire uses the NeuroNode to get our attention when she needs us to do something for her. Claire will ask to have her trachea tube suctioned, to go to the bathroom, to have her mouth wiped, to watch something else on TV. To answer yes or no to questions we ask her.
While Menke has not expressed her opinion on what the NeuroNode means to her, Daean thinks her daughter is happy to have reconnected with her family.
Daean, her husband Jay and their daughters Emily and Amanda and their son Alex have high hopes for the NeuroNode and for Claire’s ability to use it. Daean connects the NauroNode to Claire when she gets in her power chair. Claire practices using the NeuroNode for short periods during the day. In the six months she has been using NeuroNode, Menke has shown a strong determination to do everything she can with it. Her determination has increased the affection and pride her family has for her.
Daean says her husband and children talk to Claire about daily events, TV shows, movies and other topics. When other people use the NeuroNode to communicate to Claire, Daean says, “You can see Claire enthusiastically writing the answer in her mind. When it’s time to respond she you know she feels joy in being able to respond. I can’t help but believe she feels she is achieving a small degree of independence.”
What do people who have ALS think of the NeuroNode?
Thirty-three year old Tom Carradine was diagnosed last year with ALS last June. He is fearful of the future. He says, “The NeuroNode sounds like a gift from heaven .It gives me hope that as my ALS progresses I can possibly be productive until my last moments.”