{"id":29819,"date":"2021-04-12T18:09:44","date_gmt":"2021-04-12T22:09:44","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?p=29819"},"modified":"2024-10-15T18:49:37","modified_gmt":"2024-10-15T22:49:37","slug":"nphmerlinstory","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/nphmerlinstory\/","title":{"rendered":"A Mystery Disease: One Woman’s Struggle to Get Diagnosed with NPH"},"content":{"rendered":"
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“I always say, I have hydrocephalus but it doesn\u2019t have me.”<\/p><\/div>\n

Merlin Bott remembers the day she first started feeling sick. 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\u2019t keep anything down, kept falling over and started having problems with her short-term memory.<\/p>\n

She consulted her ear, nose and throat doctor, who ended up performing a balloon sinuplasty procedure, thinking she had a terrible ear and sinus infection. Unfortunately, her symptoms only continued to worsen. Soon, she became so dehydrated that she had to be hospitalized.<\/p>\n

\u201cAt the hospital, they thought I had h pylori because I kept throwing up and they also thought I might have lung cancer so they ran several tests. They even thought I might have some type of dementia since my memory was so bad at that point. Then, since I was a flight attendant they thought I caught a rare disease overseas like SARS or TB. So I was quarantined for 48 hours. They called in the CDC to come in and do independent tests on me. The tests came back negative for everything,\u201d Merlin explained.<\/p>\n

Finally, doctors performed a lumbar puncture and discovered that she had excessive fluid in the brain. She was told she likely had hydrocephalus but not to worry about it and was told she could go home. Wanting to seek a second opinion, Merlin and her husband Chris sought out a neurosurgeon at the Cleveland Clinic. The neurosurgeon performed an MRI and gave them bittersweet news.<\/p>\n

\u201cHe said she needs brain surgery and she needs it now. I was hesitant and thought, \u2018isn\u2019t there a pill that can help her get better?\u2019 The doctor said there wasn\u2019t and the next day she had surgery to have a shunt placed,\u201d said Chris, who has been with Merlin every step of the way throughout her journey. \u201cIt was a horrible feeling. When you\u2019re told your loved one need brain surgery you just think, \u2018oh my god will our lives ever be the same?\u2019\u201d<\/p>\n

It turns out that Merlin had normal pressure hydrocephalus<\/a> (NPH), a type of hydrocephalus most commonly seen in older adults. People with NPH typically have difficulty walking, cognitive impairment, and impaired bladder control. Merlin had all of those symptoms.<\/p>\n

Since NPH symptoms often mirror those of other diseases that affect people over 60, like Alzheimer\u2019s, Parkinson\u2019s or other neurodegenerative conditions, many people with NPH struggle to be diagnosed correctly. In fact, it\u2019s estimated that 1 in 10 dementia patients actually have NPH but may never be diagnosed.<\/strong><\/p>\n

In total, Merlin spent 29 harrowing days in and out of the hospital.<\/p>\n

Since her shunt surgery, life for Merlin changed for the better. While her recovery wasn\u2019t easy, she slowly regained her ability to walk. The vertigo disappeared and her memory improved. Today, Merlin is 66 years old and is enjoying her recent retirement from over 35 years as a flight attendant.<\/p>\n

She considers herself one of the lucky ones.<\/p>\n

\u201cI came close to dying and was down to 85 pounds. But I\u2019m a strong person and fought hard to come out of this, with Chris\u2019 help. I always say, I have hydrocephalus but it doesn\u2019t have me,\u201d Merlin said.<\/p>\n

A big part of her recovery was finding the Hydrocephalus Association, which helped her connect with other individuals who are living with NPH.<\/p>\n

\u201cI started participating in the Hydrocephalus Association WALK to End Hydrocephalus<\/a> and met others who have NPH. Connecting with others who have what I have was so important because I didn\u2019t know what hydrocephalus or NPH was and had never met anyone with this condition,\u201d Merlin said.<\/p>\n

She hopes HA\u2019s research efforts will help identify more ways to treat hydrocephalus and lead to a better understanding of why NPH develops.<\/p>\n

\u201cI don\u2019t know how I got NPH. We need to know more about hydrocephalus and we need more treatments other than brain surgery. If we can keep doing research and find other treatments and a cure, I would love to see that in my lifetime,\u201d she said.<\/strong><\/p>\n\r\n

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