About the Book

In this highly anticipated first book from Merlin Bott, she tells the story of a woman who discovered late in life that she was stricken with an incurable condition that most people have never heard of, Hydrocephalus. She takes readers on her journey from discovery to acceptance and everything in between, as well as her relentless desire to help find a cure for this disease that has affected so many people.

Understanding Hydrocephalus

Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles, resulting in pressure on the brain — in simpler terms, fluid on the brain. It affects over 1 million Americans, ranging from babies to older adults, and there is currently no cure for hydrocephalus, but it can be treated.

Her Personal Journey

She remembers the first day she started feeling sick when she woke up one morning in October 2013 with a severe case of vertigo. It quickly got worse, and over the next few days, she couldn't keep anything down, kept falling over, and started having problems with her short-term memory. She consulted an ear, nose, and throat doctor who performed a balloon sinuplasty procedure because he thought she had a terrible ear and sinus infection. Unfortunately, her symptoms only continued to get worse, and she had to be hospitalized.

At the hospital, after several tests were conducted, she was still being misdiagnosed with various illnesses from H-pylori to cancer. They even thought that since she was a flight attendant, she may have caught a rare disease overseas like SARS or TB. It got so bad that the Center for Disease Control had to independently conduct their own tests on her to ensure public safety, and in the end, those tests were negative.

Finally, doctors performed a lumbar puncture and discovered that she had excessive fluid in her brain. They told her that she likely had hydrocephalus but reassured her not to worry and sent her home. She and her husband sought a second opinion from a neurosurgeon who performed an MRI and confirmed the hydrocephalus diagnosis. Brain surgery was the only solution for any quality of life Merlin would have, so the next day, doctors successfully removed the fluid from her brain and inserted a shunt. It turned out she had Normal Pressure Hydrocephalus (NPH), a type of hydrocephalus most commonly seen in older adults.

Symptoms and Diagnosis

Most people with NPH typically have difficulty walking, cognitive impairment, and impaired bladder control — all of which she experienced. NPH symptoms often mirror those of other diseases that affect people over 60, like Alzheimer's, Parkinson's, or other neurodegenerative conditions, making diagnosis challenging. It's estimated that 1 in 10 dementia patients actually have NPH but may never be diagnosed.

Recovery and Reflection

She spent 29 days in and out of the hospital, and now her life has changed for the better. She had to learn to walk again, the vertigo has disappeared, and her memory has improved. Today, she is retired from being a flight attendant for over 35 years and considers herself very lucky because she came so close to dying, with her weight dropping to 85 lbs. She always says, "I have hydrocephalus but it doesn't have me.", a testament to her triumph over this disease.

Support and Hope

A big part of her recovery was finding the Hydrocephalus Association, which helped her connect with others living with NPH. She participates in the annual Hydrocephalus Association WALK to End Hydrocephalus and has met others with NPH. Her hope is that the HA's research efforts will help identify more ways to treat hydrocephalus and lead to a better understanding of why NPH develops.