Tag Archives: Locked-In Syndrome

What is Locked-In Syndrome (LIS)?

Allison and Kevin taking a walkImagine lying there, unmoving, totally paralyzed—and your only way of telling people “I’m not dead. I’m still here!” is the blink of your eyes. You can feel all sensations. You can feel every touch on your body but are unable to move. LIS is very rare and occurs in 1% of strokes.

If you know someone is locked-in, talk to them to keep their mind stimulated. Explain what has happened, their daily schedule, how to answer and form your conversation in the form of a question. This way, the patient can blink one for yes and twice for no. Don’t talk about them as they can hear you and usually understand what is going on.

Being locked-in is immediate and occurs with a brain stem stroke. The brain stem maintains breathing, houses the cranial nerves, and contains nerve pathways that connect your upper brain to the spinal cord.

Individuals with LIS are conscious and can think and reason, but are unable to speak or move. This leaves individuals completely mute and paralyzed.

Persons with LIS can communicate using a communications board via an alphabetical code. My speech therapist at MNRH introduced me to communications board to use. A person goes up, down, and across the columns with the alphabet, and the patient blinks at the right letter. The letters form a word or word as a way to communicate—not the easiest, and patience is required. A book was also created a book of visuals of commonly used items to point to as well.

LIS is often mistaken as being in a vegetative state, which is when people can open their eyes but are not aware of their environment. In locked-in syndrome, the person is fully aware of their environment, but cannot talk or move. In truth, you look different, have an empty look, and can’t do anything, but you are still the same person inside.

It is a lot for the family to handle, even more for the patient. Rehab, rehab, rehab is most important. Even though the patient can’t do a lot, they need the rehab. You are doing what’s best for the patient. Could you do it? You might be scared, but you have to be strong for the patient.

An Inspirational Story of Survival in the Face of Stroke & Locked-In Syndrome

book_cvr“I cleaned the house, which to me was like therapy. Later that evening, I spoke to our friend and dentist, Brian,
and said I didn’t feel well. He thought it was because I
had not eaten. Then later, the room started to spin. I also
had a terrible ringing in my ear and nausea. I just didn’t
feel right. I called my neighbors (Gisela and her husband,
Richard) and asked them to come over, as Kevin was on a
flight from Arizona. I unlocked the door for my neighbors
to come in, holding on to furniture to maintain balance as
the room was spinning, and went back onto the bathroom
floor. Upon entering the house and seeing me on the
bathroom floor, they said either they were taking me to the
emergency room or calling 911. They immediately helped
me down the front stairs and we were on our way; the
hospital was ten to fifteen minutes away. It was late, and the ER was somewhat full. She told the attending nurse, “You must take care of my friend now!” They did a test and ruled out a heart attack.

Next, they did a CT scan (which I don’t remember)and said I had vertigo and was dehydrated. They gave me fluids. Kevin arrived around midnight, and around 2:30 a.m., they released me from the hospital and sent me home with prescriptions to be filled in the morning.”

This is just a peek inside the book. You know your body and if something just doesn’t feel right. Fortunately, I was alert enough to be able to call a neighbor. If you were alone in an emergency, could you call a neighbor or 911? Be prepared should an emergency happen. Learn the symptoms  of stroke and go to the ER. Be better prepared and better safe than sorry. You’ll also know to have them rule out stroke.

May is Stroke Awareness Month

ResizeImageHandler.ashx copyHow much do you know about strokes? Most people are not well informed in what a stroke is and how they happen because it’s not important at the time. But, it is. I thought strokes happen to older people, so I didn’t need to worry. May is the perfect time to learn about strokes. When someone has a stroke, everyone around that person is affected.

Spouses, family and friends are overwhelmed when a trauma happens, so be prepared. I also want to share what we found helpful, including ongoing encouragement.

Out of the Darkness is my first-hand experience of a brain stem stroke resulting in a Locked-In Syndrome. This book chronicles the events of my massive stroke, as well as my will and determination to fight for my life and independence. This is the story of a miraculous recovery in the face of enormous odds, the task of relearning everything, the overwhelming challenges, and the lessons I learned about myself when faced with adversity. My positive attitude and being goal-oriented also played a big role.

The word “stroke” is scary, but not knowing is worse. Reading Out of the Darkness gives a stroke survivor’s account and it gives the reader a glimpse into the mindset of the person going through the trauma.

“Out of the Darkness” – My New Book

"Out of the Darkness"   by Allison O'Reilly
“Out of the Darkness” by Allison O’Reilly

My inspiration for writing “Out of the Darkness” was to share my experience. I am just an average person and if it can happen to me, it can happen to anyone. Locked-in Syndrome is very rare, occurring in 1% of strokes and the outcome is usually not good. I was very lucky… so to speak.

I am trying to make something good come out of this nightmare. I had a massive stroke and the book shares my will and determination to fight for my life and independence.

This is the story of my miraculous recovery in the face of enormous odds, the task of relearning everything, the overwhelming challenges, and the lessons I learned about myself when faced with adversity. Having a positive attitude and surrounding yourself with encouragement is most important.

I want survivors, caregivers and the medical community to look at stroke patients by what they can do or their potential, not what they can’t do.