In June 2003, I was in Rio de Janeiro presenting a paper. Upon my return I found that my mother who lives in Hickory, North Carolina had fallen and fractured her pelvis. She described this experience as one in which her feet just gave way underneath her. My mother is a retired nurse and we both knew of her long history with osteoporosis and that a risk of a fall was always present. So this fall did not trigger in our minds other potential problems.

From June 2003 until August 2004, my mother and I spent a year of watching a series of symptoms unfold and trying to get a doctor to diagnose her correctly. She had progressive symptoms that included dementia, falls, a shuffling gait, urinary tract infections (UTIs) and headaches. Then, during August of 2004, she developed tremors that could make one think she had Parkinson’s Disease.

During the year from June 2003 through August 2004, I took my mother to two different neurologists in Hickory, NC, a neurologist in Winston Salem, NC at Baptist Hospital, and even went to a neurologist at Duke University. All neurologists were inconclusive as to a definitive diagnosis. With each neurologist, I asked if they would consider a spinal tap. This request was to no avail.  Perhaps I was not forceful enough or just the fact that I was a nurse trying to tell a doctor what to do was threatening. I am unsure.

Heard National Public Radio Story 

Then in August of 2004, I started a Post Doctoral Fellowship in the School of Nursing at the University of North Carolina at Chapel Hill. My assigned mentor, Dr. Mary H. Palmer, a Distinguished Professor of Aging, emailed our group the website your National Public Radio talk. It was upon listening to this talk that I realized Dr. Tom Von Sternberg’s mother had a similar pattern of symptoms as my mother’s. I must say there was disbelief and yet hope that emerged.

I contacted Dr. Triswant Garcha, a neurologist at Davis Regional Medical Center and a long time colleague. He confirmed that it was possible my mother could have Normo-Progressive Hydrocephalus (NPH) given the symptoms. He agreed to do a spinal tap, but also shared with me new information regarding a NPH clinic that had only been opened a short period of time in Charlotte, NC. So we decided the best strategy would be for her to get a screening at this clinic specializing in NPH.

Diagnosis and Surgery

My mother had her first appointment in September 2004. By this time, her dementia was such that she could not repeat three words spoken to her after five minutes. Her gait was so severe she required a walker for short distances and a wheel chair for mobility. With each fall she had incontinence and a UTI.  She was also living with a constant headache.

Her second visit to the clinic in October was for a spinal tap to do an infusion study that proved she had NPH. There was great relief to have a definitive diagnosis. Dr. Scott McLanahan, a neurosurgeon, made the diagnosis and performed surgery on November 5, 2004 at Carolinas Medical Center in Charlotte, NC.

My mother spent 21 days in the hospital post operatively and had numerous complications. She was discharged home on Thanksgiving Day. Over the next three weeks she required constant attention, physical therapy three times a week, oxygen therapy, and a great deal of work to help her gain her strength after a 15 pound weight loss made her appear frail.

I Have My Mother Back

Today she no longer has dementia, walks with a normal gait, and there are no more falls. She has a shunt in her head that will require adjustment over the next six months after which hopefully she will be stabilized. I now have my mother back in my life, a woman who I can have a conversation with, can give me advice, and can listen to me describe my work day and remember the conversation. This past weekend, I had her take an overnight trip with me and we went shopping without the use of mobility devices for the first time in one and a half years.

If I had not come to Chapel Hill for a Post Doctoral Fellowship and heard your NPR talk, I am unsure where I would be right now with my mother. So I send you this letter, just as a note to make you aware that one never knows the number of lives one might touch through the sharing of their stories.

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