In this highly anticipated first book from Merlin Bott 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. 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. 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 that 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 types of illnesses from H- pylori to cancer. They even thought that since she was a flight attendant that she may have caught a rare disease overseas like SARS or TB. It got so bad that the Center for Disease Control came had to independently conduct their own test 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 and told her that she likely had hydrocephalus but not to worry about it and sent her home. She and her husband got 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 that Merlin would have so the next day doctors successfully removed the fluid from her brain and inserted a shunt. It turns out that she had Normal Pressure Hydrocephalus (NPH), a type of hydrocephalus most commonly seen in older adults. Most people with NPH typically have difficulty walking, cognitive impairment, and impaired bladder control all of which she had
NPH symptoms often mirror those of other diseases that affect people over 60, like Alzheimer's, Parkinson's or other neurodegenerative conditions, many people with NPH struggle to be diagnosed correctly. It's estimated that 1 in 10 dementia patients actually have NPH but may never be diagnosed.
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 to be very lucky because she came so close to dying and her weight dropped to 85lbs. She always says, "I have hydrocephalus but it doesn't have me". A testament to her triumph over this disease.
A big part of her recovery was finding the Hydrocephalus Association which helped her connect with other individuals who are living with NPH. She participates in the annual Hydrocephalus Association WALK to End Hydrocephalus and met others who have 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.