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A Survivor’s Tips on Approaching Stroke Recovery

Locked-in syndrome is a condition that results in complete paralysis of nearly all the muscles in the body. Patients are aware and awake, but cannot move or communicate.

To the left: Author Kate Allatt sits in her hospital room after having her tracheotomy removed after three and a half months.

The effects of Locked-In Syndrome

I am no medic, but in my own words locked-in syndrome following a brainstem stroke felt like being trapped inside by own body, or being buried alive. I felt everything but could move nothing. I suffered leg cramps that I could neither relieve, or tell anyone that I had.

I was fully cognitively aware, although I was considered ‘brain-dead’ which is actually very different to having a ‘damaged-brain.’ I was totally unable to move anything for eight weeks, except blink, though this wasn’t an obvious action to my loved ones. During the eight weeks I was on a life support, I suffered desperate insomnia and hallucinations. I managed to flicker my right thumb a millimetre only, while my left side didn’t budge for three and half months.

I didn’t speak for seven months, nor did I even shuffle in an oversized baby stroller, for nearly half a year. I was fed through a tube for seven and a half months and had a tracheotomy for three and a half. It was my strong focus, repetitive practice, experimentation with F.E.S systems, support from my loved ones and sheer determination that brought me back.

A Survivor’s Tips for Recovery

My experience, combined with those of other survivors, has given me some ideas on how we can help patients overcome locked-in syndrome and make significant progress in their recovery.

1. All Strokes are Different. Fact

It’s impossible to know exactly how recovery will unfold for any stroke survivor. Rehabilitation may occur quickly or it may take a lifetime. Don’t accept a ‘plateau’ in recovery, no matter how slow the progress, there are constantly improvements following a stroke.

2. Pursue Immediate Intensive Therapy

Patient centred therapy should be pursued immediately following a coma. All elements of the recovery team should be firing on full, including psychologists, physiotherapists, speech pathologists, and physical therapists.

3. Find an Effective Way to Communicate

Explore communication tools, like a communication board, to help survivors express themselves. I consider it essential to have an ‘end of word’ box on the communication board. It is also important to have a TV and a radio in the room that gets periodically switched on and off.

4. Understand Neuroplasticity and Stay Motivated

Neuroplasticity is the brains ability to develop new neurological function. Through neuroplasticity, if a stroke survivor looses their ability to speak, a new area of the brain can be trained to perform this function. Understanding neuroplasticity can help a survivor stay motivated during rehabilitation.

Many patients will experience shock, pain and depression upon their initial diagnosis. Keeping a patient motivated to pursue recovery is the only way it will happen. It’s takes determination and hard work, but it is possible.

By: Kate Allatt, Stroke survivor and founder of Fighting Strokes.org

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"It was my strong focus, repetitive practice, experimentation with F.E.S systems, support from my loved ones and sheer determination that brought me back."

Kate's Story

To read more about Kate Allatt and her experience with locked-in syndrome, click here.

See through the eyes of a victim of locked-in syndrome and find out what motivated her to pursue a complete recovery.

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