Recently we had the chance to talk to one of our partners Dr. Rossella Spataro from Centro SLA (Sclerosi Laterale Amiotrofica) in Palermo who managed to successfully communicate with ALS patient Carmelina. Due to the lack of feedback it was difficult to judge Carmelina’s condition. mindBEAGLE – a system developed by Guger Technologies – enabled Dr. Spataro to communicate with her patient and gained new insights about the extent of Carmelina’s awareness and consciousness.
Watch the video with Carmelina’s daughter:
Dr. Spataro, what illness does the patient suffer from?
Carmelina has ALS. Onset occurred in 2010, at the age of 56, when she noticed weakness in her legs. In the following months, she felt worse and had difficulty in walking. She also faced arm weakness, difficulty in speaking and swallowing, and respiratory insufficiency. She was tracheostomized in April 2013.
When did she stop controlling her movements?
In 2013, she progressed to complete locked-in syndrome (CLIS). This means that she has quadriplegia and cannot produce any form of communication. At first, her family could perceive her emotions thanks to the changes of the heart rate or when she produced tears, but gradually even these signals from her disappeared.
Rossella Spataro works with ALS patients.
How did her family feel about the patient’s condition?
Carmelina has a very loving family. They never stopped talking to her, inviting friends at home and showing her movies and pictures she had loved. However, they had also moments of despair in which they feared she was unaware of everything. When a patient cannot speak or move in any way, how can you know if she can hear and understand you?
What was the family’s experience with mindBEAGLE?
They were fascinated with the opportunity to explore the Carmen’s cognitive functions with a brain-computer interface (BCI). During the mindBEAGLE runs, there was a long period of silent suspense while the family was waiting for results. Hence, they were very enthusiastic to learn that Carmen could hear, understand language and follow commands, and that she’s aware. It was like when someone had already stopped hoping, and something unexpected happens and changes the perspective completely. A great emotion!
“We now understand that my mother can listen to us, she can feel that we love her, and we are happy for that.”
Did mindBEAGLE change the daily care of the patient?
Once they learned that Carmen is conscious, the relatives and caregivers were motivated to interact with her extensively. It is important to address any aspect of management (e.g. treatment of pain, skin care, but also environment’s light and noise) to guarantee her comfort.
Thanks for your time, Rossella.
Dr. Rossella Spataro from Centro SLA (Sclerosi Laterale Amiotrofica) in Palermo is a clinical neurologist with an extensive experience on neurodegenerative disorders with special focus on Amyotrophic Lateral Sclerosis (ALS). Research topics involve neuropsychological, genetic and epidemiologic aspects of ALS. Dr. Spataro is now running several research projects, with particular reference to BCI in locked-in ALS patients, end-of-life issues and advance will in neurodegenerative diseases.