Meryam Shershaby
Imagine being alive, yet completely frozen in your own body. You try to move your hands or your legs but nothing works. Imprisoned in a state of nothingness for years.
You are then given a drug that allows you to suddenly start to walk and sing. This is exactly what happened to a group of patients after taking L-DOPA for the first time.
From 1916 to 1930, a strange illness swept parts of the world (in particular Europe).
Until this day its etiology is not well known. It resulted in patients developing movement disorders and becoming progressively more tired until they passed into a coma-like state; some patients remained in this state for more than 40 years. As such the disease became known as Encephalitis Lethargica or the “sleepy sickness”.
Years after the epidemic a neurologist named Oliver Sacks gathered 80 patients with Encephalitis Lethargica into one hospital ward. They came from a variety of nursing homes where they had been treated like objects.
At the time, L-DOPA was a brand-new treatment for Parkinson’s disease. Parkinson’s is a neurodegenerative disorder that results from a lack of dopamine. Dopamine however does not cross the blood brain barrier. L-DOPA is a precursor of dopamine that can pass the BBB and as such became the drug of choice for treating Parkinson’s.
The “sleeping” patients had similar symptoms to Parkinson’s disease. Oliver Sacks, therefore, believed that this drug would also benefit these “seemingly” sleeping individuals.
His only worry was that these patients had been sleeping for decades. They would suddenly awake into a world that was no longer their own. What would this do to them?
He decided to go through with the trials because of the severe disabilities these patients suffered. They began treatment. It was like seeing the dead arise....
Suddenly these patients could walk and talk and dance with joy. As if jolted awake. Their faces that had been expressionless for years, and so, appeared young. They were so eager to experience the world.
One side effect of the drug was uncontrollable twitching but they wrestled through it. All they wanted was to experience life once again.
Quickly though, the story became darker. The patients started to exhibit strange side effects. Ticks became stronger. Psychological disturbances appeared, as well as an extreme sexual desire.
The patients built up tolerance to the drug and a larger dose was needed to produce any therapeutic effect at all. Some deteriorated to a state worse than they had been pre-drug. One patient told Dr. Sacks, “My breathing is no longer automatic, every so often I have to remember to breathe”.
The patients all had different reactions to L-DOPA. Some did well; particularly those with stronger social connections. A common paradox was that patients became in deep need of the drug even if they couldn’t tolerate it. Both a blessing and a curse.
All 80 patients have since passed away but their stories have taught us valuable lessons. Lessons of scientific importance and lessons on empathy and compassion. Medicine is after all the oldest art and the oldest science.
References:
Awakenings by Oliver W. Sacks (book, 1990)
https://www.ninds.nih.gov/Disorders/All-Disorders/Encephalitis-Lethargica-Information-Page
Watch these patients come to life: https://m.youtube.com/watch?v=-n4ypD6G3aI
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