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KATE ALLATT
September 2017

On this month’s update, we are glad to share one of the most extraordinary stories that we came across to in the past months.

In February 2010, 39-year-old obsessive runner Kate Allatt suffered a catastrophic brainstem stroke. When she emerged from her medically induced coma, she was diagnosed with Locked-in Syndrome (LIS), a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles. Doctors told her husband that ‘she would be better off dead’. For the next two weeks, Kate was able to think, feel, see and hear but unable to communicate at all with her family and friends. It was her friends who spotted that she could try to communicate by blinking. For nine weeks in ICU, Kate felt lonely, suffered hallucinations, was scared, bored, frightened, isolated, vulnerable, emotional and in extreme pain. 

Thanks to the support of her family, Kate went onto recover almost fully and was able to run again just twenty-one months after her debilitating stroke.  Since then, she has been a global LIS advocate and campaigner. She is passionate that regular patient communication and stimulation are basic human rights for comatose, vegetative, unconscious and minimally conscious patients in hospital. Don’t miss her speech at TEDx talk on the subject in 2015. 

Quite by chance, Kate’s cousin connected her to the founding Team of FamilyPlug, whose mission to connect and digitalizing the interaction between patients and their families felt immediately in line with her role as an activist.

Kate says, “the Mobile Application FamilyPlug has originated from a basic human need and certainly could have given me regular ‘virtual visits’ with family and friends when they were unable to visit me in hospital. The technology works automatically without the need for a nurse to start the smart phone or app which is essential. My loved-one voices could have not only comforted me, alleviated some of my boredom and even motivated me during those dark times.”

Today, the Team behind FamilyPlug and Kate work together in order to increase global awareness on these rare and painful conditions while actively supporting patients and their families alleviating suffering.

STORIES WE TELL
February 2017

In the past months we have shared in this blog our findings concerning the different stages following a comatose state and the level of awareness that a patient can experience. Today we want to share with you a message of hope, presenting three remarkable stories of people fully recovering their abilities after a long-term unconscious states and very low recovery expectations.

Sam Carter

In 2008, 60-year-old retired baker Sam Carter had fallen into a coma from severe anemia, which occurs when a person’s red blood cell count gets too low or blood lacks hemoglobin. Carter had been in a coma for three days, and he was given a 30 percent chance of recovering. The doctor suggested his family to constantly stimulate him, eventually playing some music. His wife got a set of headphones and put them on her husband, playing the Rolling Stones classic “(I Can’t Get No) Satisfaction.”

Amazingly, once the song was played, Sam opened his eyes. Sam says that the song gave him energy and pulled him out of the coma. He doesn’t remember much from those unconscious days, but he remembered hearing that song. The song also had a special meaning, as was the first CD he ever bought when he was 17 years old. He said it gave him the push he needed to wake up.

Jarrett Carland

On August 16, 2009, 17-year-old Jarrett Carland and his best friend were involved in a car accident. His best friend was killed and Carland fell into a persistent vegetative state. Doctors said that he would probably never wake up. Carland underwent therapy, and part of that therapy was listening to music. In the care center where Carland stayed, the other patients listened to soft and gentle music, but Jarrett’s parents blared country music legend Charlie Daniels.

After lying in a coma for four months, his parents got a reaction and eventually Jarrett came out of his coma. Six months later, at the Riverbend Music Festival in Chattanooga, Tennessee, Jarrett got to meet the man who helped him while he was in his coma: Charlie Daniels. Jarrett has fully recovered since.

Jan Grzebski

In 1988, while working on the railroad, Jan Grzebski had his head partially crushed while trying to connect two railroad cars. According to a report coming out of his home in Dzialdowo, Poland, he spent the following 15 years in a coma. His wife spent with him most of her time during this long period. Then, he woke up, and the world was completely new to him. Poland was no longer a communist country and he had to be introduced to his 11 grandchildren. The story was picked up by news organizations around the world, including the Associated Press and the BBC. However, after the story made headlines, Grzebski claimed such stories were exaggerations. In fact, he claimed that he had been in an actual vegetative state for only 4 years. When he woke up, he was still mute and paralyzed, but was partially aware of what was going on around him (Locked-in Syndrome). He heard the television and knew that Poland was no longer communist. He finally re-learned how to talk and even walk.

VEGETATIVE STATE
November 2016

The disorder of consciousness is a state where consciousness has been affected by heavy damage to the brain. Generally speaking, a brain trauma causes a Coma, a state of unconsciousness (no signs of awareness) that can last from few minutes to several weeks, during which time a person may wake up or progress into a complete recovery or, in the most serious cases, a vegetative state or minimally conscious state. A person in a coma lies with their eyes closed and doesn't respond to their environment, voices or pain.

 

Post comatose states have been defined only in recent years in function of the capacity of the patient to react to basic stimulations.

 

A person in a vegetative state may open eyes, wake up and fall asleep at regular intervals and have basic reflexes, such as blinking. They're also able to regulate their heartbeat and breathing without assistance. However, a person in a vegetative state doesn't show any meaningful responses, such as following an object with their eyes or responding to voices.

 

A person who shows clear but minimal or inconsistent awareness is classified as being in a minimally conscious state. They may have periods where they can communicate or respond to commands, such as moving a finger when asked.

A person may enter a minimally conscious state after being in a coma or vegetative state. In some cases a minimally conscious state is a stage on the route to recovery.

 

Locked-in syndrome has similar features to disorders of consciousness, but is considered and treated differently. A person with locked-in syndrome is both conscious and aware, but completely paralysed and unable to speak. They're usually able to move their eyes and are sometimes able to communicate by blinking.

 

Disorders of consciousness can occur if the parts of the brain involved with consciousness are damaged. These types of brain injury can be divided into traumatic brain injuries, non-traumatic brain injuries and progressive brain damage.

 

Treatment can't ensure recovery from a state of impaired consciousness. Instead, supportive treatment is used to give the best chance of natural improvement. This can involve offering opportunities for periods of meaningful activity – such as listening to music or watching television, being shown pictures or hearing family members talking

 

It's impossible to predict the chances of someone in a state of impaired consciousness improving. Nevertheless studies have proven that a constant communication towards the patient can accelerate the recovery process and increase the chances of reaching a better quality of life. #FamilyPlug

OUR MISSION
April 2016

One of the most common questions we get is why we’re focused on developing a communication platform for unconscious or only partially conscious patients.

The answer is simply: the actual level of their self-consciousness remains today unclear. When a patient wakes up from a Coma, he/she enters a conscious state that will be defined by his capacity to control his body, as well as by the brain activity registered by scanners.

Nevertheless, the incapacity to control movements, speech and eyes, as well as the presence of blood within the brain, is not definitive indicator of the actual level of self-consciousness of the patient. Consequently, doctors invite family members and close friends to keep in regular contact with the patient and to attempt communication as often as possible. Unfortunately, the only current way to do so is by visiting in person or using standard remote communication tools (Skype, Telephone).

Both solutions are difficult to organize and inevitably create distance between the patient and the friends and family wanting to communicate. Research shows that visits from friends and family become less frequent four to six months after stabilization in a Vegetative or Minimal Consciousness State, while patients maintain an average life expectancy of more than 7 years.

This data does not suggest that people stop caring about a patient. However, it is a clear sign of the frustration generated by the difficulty in maintaining regular and easy communication using the physical and technological options available to them.
It is this difficulty that FamilyPlug aims at resolving.

IF YOU CAN DREAM ABOUT IT..
February 2016

Since January 1st 2016, FamilyPlug, along with our Shanghai-based development partner QP Software, have been working on a unique tool to make regular, long-distance communication with these patients effortless and convenient.

The complexity of the task requires that we take many factors into consideration. How can we make sure that a patient will be able to access suitable and entirely automated communication channels without compromising his/her privacy and mental stability?

 

First, we had to question what were the problems with existing communication platforms (WhatsApp, Wechat, Instagram, Facebook, Messenger, etc). We found that their software architecture places network management at the forefront, while placing the conversation elements, whether text, video or images as the second layer. Therefore, in order to fully enjoy these tools, it’s necessary to be able to interact with a device.

FamilyPlug places the conversation (Video, Audio or text message) at the forefront of the app, allowing us to develop an auto-play system enabling a user or patient to receive messages without having to interact with the device.

 

 

Second, we had to consider the patient’s privacy. Someone in a state of immobilisation within a Rehabilitation Centre or an Intensive Care Unit will not be able to decide when to receive messages. Therefore we developed a Smart-Cloud system.

FamilyPlug will require users to define timeslots for messages to be played. Incoming messages will be stored within our Smart-Cloud, waiting for the suitable timeslots to open (i.e. from 2pm to 4pm), allowing doctors and family to preserve the patient’s privacy at night or during unsuitable hours.

 

 

In addition we observed that some patients had trouble hearing specific sounds and seemed to be particularly troubled by extra low or extra high frequencies such as those present in music.

In response, FamilyPlug has developed an equalizer that scans audio and video messages and filters out certain frequencies, allowing the most comfortable listening experience for the patients.

 

 

Finally, we had to consider that very personal and emotional connection between the patient and his/her support circle. We wanted to ensure that their private and often emotional messages would remain just between the sender and the patient.

Consequently, FamilyPlug will not store any of the messages shared with a patient. Once downloaded and played, messages tagged as private are deleted from the phone and our Cloud, leaving no traces and ensuring the full privacy of the message is preserved.

 

 

Now you can support your loved ones from anywhere, at any time.

 

WE ARE HERE TO STAY
October 2015

After 6 months of intense research and data crunching, we are proud to announce that investors from Europe and Asia are supporting FamilyPlug, and that the company was officially incorporated September 21st, 2015. Our mission is to create a new tool in Digital Health, providing a messaging service application specifically conceived for immobilized patients (Comatose State, Vegetative State, Locked-in State, Minimal Consciousness State). and establishing a permanent connection between patients and those who wish to support them.

FamilyPlug will revolutionize Occupational Therapy (OT) and Healthcare. Any family member or close friend will be able to count on a remote communication tool in order to support their loved ones. With FamilyPlug installed on a smartphone and setup in a patient’s room, any approved contact will be able to share a video message or piece of music. The sent messages will land on the patient’s mobile phone and will be automatically played without the support of any third party.

In addition, families and Doctors will be able to choose the hours of the day when messages are delivered to the patient.  If a patient is only able to receive messages during a particular afternoon timeslot, any messages received out of this window will be stored in the cloud, waiting for the right moment to be downloaded and played.

Last but not least, support messages tend to be personal and loaded with emotion. Consequently, downloaded messages are automatically played and then deleted forever. Your message of support will remain private.

FamilyPlug. Coming Soon.

WHO WE ARE
July 2015

How many people have to live in a state of immobilization? How many have suffered from brain injuries and are in a comatose, vegetative or Minimal Consciousness state? How many people have to assist these patients on a daily or weekly basis?

When we undertook the task of creating a communication platform allowing users to actively support the recovery of a patient, we carried out research that revealed that the scope of those affected was much larger than we thought.

 

We discovered that only a few international organizations have data concerning the incidence of these conditions. Nonetheless learned that 1 out of every 1000 adults is currently physically immobilized and depend on a third party in order to communicate with the outside world.

FamilyPlug was developed to be a solution for us, for them and for their families.  We hope you will stay with us and support our project.