My wife was showing symptoms of normal pressure hydrocephalus (NPH) for most of 2023, though at the time, I had no idea what was happening. She’s never been a fan of doctors and refused to schedule a check-up during that period. She could still walk, but more slowly, and her friends began to notice changes in her personality

Everyone—friends, neighbors, and family members—noticed her changes. They were deeply concerned and wanted to understand what was happening. My wife and I continued having strange conversations about matters that should have been part of normal, everyday life.   

As 2023 went on, she continued to slow down, and I had no answers as to why this was happening. Eventually, I convinced her to go see a doctor, but he said her symptoms were likely due to age.  

After we returned from our Thanksgiving vacation, her walking worsened, and suddenly, she couldn’t walk at all. I rushed her to the hospital, where she was finally diagnosed with NPH.  

My wife is now 65 years old. She had surgery to place a shunt to drain the excess cerebrospinal fluid (CSF), but unfortunately, she still experiences symptoms of incontinence, walking concerns, and is very emotional. She was recently diagnosed with Lewy Body dementia, as well as NPH. Physical Therapy (PT) has been difficult because she becomes easily agitated and often argues with those trying to help, but we are working with her primary doctor and neurologist to keep her active. 

I often wonder if maybe we waited too long to seek a diagnosis and treatment, and whether I should have pushed her harder to see a doctor, even though she’s always been strong-willed and reluctant to go. I am now her full-time caretaker, doing my best to find resources that can help her manage this condition as effectively as possible.  

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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Day by day, I try to imagine how these past six months may have unfolded differently. There are so many ways it could have gone wrong. John went from a carefree sheep farmer looking at retirement late last summer to wheelchair-bound in a matter of weeks, looking for a diagnosis of brain malfunction by Christmas. Was it all good? Not necessarily, but in the end, we had the best result we could have hoped for. Was it easy? There is nothing easy about day-to-day living with and watching the one you love and have devoted your life to deteriorate in front of your eyes in a slow and steady daily decline. Ever hopeful, I held on to the dream that we would get through this dark tunnel, in hopes that at the end of the tunnel, there was not a train.

NPH was the suspected diagnosis early in October 2022, but there were questions about that due to the sudden onset of symptoms. Parkinson’s was ruled out due to the suddenness of symptoms. Tumors and cancer were ruled out also after CT scans and MRIs. We had to go through the proper medical channels, exercises, and regimens pertaining to getting an accurate diagnosis with blessings of insurance. Thank goodness for insurance! After numerous doctor visits, CT scans, MRIs, and bloodwork, we secured a scheduled hospital visit at the Cleveland Clinic on January 9, 2023.

This whole drama began to unfold in mid-September. October turned into November, which led to the December holidays with little celebration as my job as sole caregiver was to keep him safe – Do Not Fall! By December 27th, I knew from John’s debilitated condition (he was now wheelchair-bound) that he could not make it to January 9th. We went to Forbes Hospital ER, knowing we could wait hours for service. When we drove up to the entrance to the Emergency Room, the security guard met us at the car and said, “You might want to go somewhere else! We have just had a shooting!” I said, “Truly, I have nowhere else to go.” So, he said to pull around, and they would be out to help us in a few minutes, which they did. We did wait over 5 hours in the waiting room and then another 10 hours in an annex before he was finally admitted to the Hospital. The treatment that followed was professional and expert, as we had prayed and hoped for. The first procedure scheduled for Friday, December 30, was a lumbar puncture to determine if a shunt would be a feasible treatment. As scheduled, the procedure was done on Friday, and John showed slight improvement. He was more alert and communicative almost immediately. The shunt was scheduled for Tuesday, January 3, 2023, with PT, OT, and ST on standby after establishing a baseline, then checking in daily to monitor John’s progress. The first sessions were painful to watch. We were all hoping for improvement, which did begin to show after the surgery for the shunt.

John was in the hospital for a few days on floor five and then was moved to floor seven for rehabilitation. He stayed at Forbes Hospital for almost three weeks. Improvement was monitored daily by all involved, and it was truly miraculous. Progress on walking was slow but steady. We kept reminding him that three months of decline could not be rectified in a few days. We were looking at months to regain his strength, but what are a few months when the results could have gone without improvement? It is a miracle, thanks to God and the doctors, nurses, PT, OT, ST, and everyone helping with his diagnosis.

It is now spring, and John is mobile again, walking without help and regaining strength and mental capacities, as we all can say, “better every day!” We don’t have sheep anymore. At my low point, I sold our 300 + sheep, realizing I had to devote all my time and energy to my one little lamb. We will decide where we go from here once John is back on the tractor again. It has been a long winter, and we look forward to a healthy, happy, carefree summer!

NPH: John’s Journey, Two Years Later

It was late in 2022 that my dear husband became wheelchair bound, was unable to dress himself, or carry on a definitive conversation. Our peaceful farm life was in turmoil, and I was busy trying to find out why this was happening to him, while trying desperately to keep him safe. My motto was “Keep him from falling!” Luckily, as time goes by, those memories have become fuzzy and are superseded by the remarkable recovery that John has made in his NPH journey.

It has been a little more than 2 years since John’s shunt surgery, I thought an update would be helpful. Time is the great healer. Although our lives have changed dramatically since John’s treatment for NPH, we, now in our late 70s, are retired from our former farm business. We miss our lamb business, as it was our daily life for over 35 years. The places we visited and the people we met pursuing our “farm to table” dream created a colorful journey that led to writing our book, “Coyotes in the Pasture and Wolves at the Door.” Now that we are through the dark tunnel of NPH treatment and recovery, we continue to live on our beautiful western Pennsylvania farm, surrounded by nature’s beauty, enjoying every day as the gift that it is!

I wrote about John’s NPH journey in a blog for Brain & Life magazine in 2023 titled Keeping Wolves at Bay.

As devastating as NPH can be, with dementia-like symptoms and mobility concerns,  I hope that NPH will come to the forefront of research, since it is treatable and can be reversed. I recently lost my sister to Alzheimer’s, as did John’s cousin’s husband. People need to know more about brain conditions and how those various conditions can easily affect anyone’s family, especially the elderly. For those friends who never saw my husband  before treatment for NPH , they often remark, “I would never have known.” Thankfully, he is back to his old self: chatty, witty, independent, walking, and caring for himself. This is an amazing miracle in our book that we love to share! It’s with enormous gratitude to the medical personnel who supported our journey and made things right for us! We are blessed

Tell us about your journey with hydrocephalus!

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I brought my husband to my follow-up appointment to hear the results. The NP went on and on about the bloodwork and bone density test results. Finally, she said, “You might want to see a neurologist or neurosurgeon in the next 6 months or so.” She went on to explain why —which we quickly realized was ill-informed.

Luckily, my husband asked for a copy of the report, and we went home to figure out what condition shared the initials with Neil Patrick Harris. It didn’t take us long to figure out that we needed a neurosurgeon —and waiting 6 months would not be ideal. Yesterday would’ve been better!

I’m fortunate to have a friend with an incredible network of specialists. I called her and said, “So, Molly, know of any good neurosurgeons?” She did. While on the phone with her, my husband was doing his own research online —and when I hung up, we had both landed on the same name! We were able to get an appointment for the following week, just after a holiday weekend.

The neurosurgeon reviewed the CT scan, while his Physician assistant (PA) ran a few tests on me. We walked in to meet with him, it took less than 5 minutes for him to say “Well, I can order you a lumbar puncture (LP), to prove to you that you have normal pressure hydrocephalus (NPH), or you can look at your scan with me —I have room in my schedule for shunt surgery next week. Which would you prefer?”

I chose surgery the following week. This was in July of 2019. By the time I got to my hospital room from recovery, my walking had already improved, and the incontinence was gone.

I needed a couple of shunt adjustments over the next eight weeks. Eventually, the neurosurgeon said, “You’re good to go —call me if you need anything!” Well, that was a surprise!

Ten months later, I called because my symptoms were returning. I had one setting left to try — and it worked for three and a half years. During that time, my neurosurgeon retired due to his own injury. I realized I needed to find a new neurosurgeon, just in case.

I found one not far from my rural home. He assured me that he was familiar with hydrocephalus and shunt systems —but he didn’t follow up at all. Not my cup of tea. I decided to go to the best.

After a shunt tap, it was determined that my valve was starting to fail. I had a revision on my valve only and the addition of a gravitational device in October of 2023. More adjustments were needed to get back to how I was feeling after the shunt tap. Unfortunately, that never happened.

About six months later, I began experiencing what I thought was just a stitch in my side. I underwent many tests — but left out neurological tests, assuming it couldn’t be an issue with the distal catheter again so soon. Eventually, I had an abdominal MRI, which was read by a very skilled radiologist. It revealed that I had a pseudocyst near my liver, caused by the distal catheter.

Getting the attention of my well-known neurosurgeon a couple of days before Thanksgiving was impossible. My husband took me to the emergency room (ER) at his hospital. Fourteen hours later, at 4:00 a.m. on Thanksgiving morning, the distal catheter was externalized at the bedside in neuro-critical care. The next day, after numerous inconclusive tests, it was assumed that I had a shunt infection, and the entire shunt system was removed.

I was discharged home with a PICC line for penicillin for two weeks. A few days after finishing the antibiotic, I returned to the hospital for pre-operative testing. My neurosurgeon wasn’t thrilled about the results, but after consulting with infectious disease, he agreed to replace the entire shunt system.

By then, all of my symptoms had returned. I was very worried about falling, even though I was using a cane in my house. The other symptoms were also quite unpleasant.

In hindsight, I realized that the falls I experienced and the urgency to rush to the bathroom —while lurching from place to place —were all symptoms of NPH. I also struggled with issues related to awareness and thinking. My husband had to stop me when we got to an intersection so I wouldn’t keep walking into the street. Being unable to respond quickly to a question from my 85-year-old stepmother was another sign of NPH. The symptoms began about two years before I was finally forced to see the NP for completely unrelated reasons.

Along the way, we discovered that the right leg weakness was actually due to Primary Progressive Multiple Sclerosis. That diagnosis also explained the scalp and facial pain I had originally mentioned to my well-known neurosurgeon. I’ve also since been diagnosed with trigeminal neuralgia.

For someone who wasn’t a fan of doctors, I now have my own phone book of specialists. Best wishes to everyone on this journey.

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I live in a very rural area of Costa Rica, with one public hospital I had never even entered, despite living here for 12 years. We have universal health care, so my entire diagnosis to recovery cost just $120, from start to finish. Wow!  

At first, I attributed my symptoms to age. I am 73 years old and, at the time, was under unusual stress due to a recent move into a new house. My feet hurt and felt heavy. I was urinating more often than usual. My memory was very poor —I was even having trouble remembering what I’d read. I would start chapter two and have no memory of what happened in chapter one.   

Finally, one day, my housekeeper said to me, “You have asked me six times this morning what day it is. Are you okay?” Then I tried to pay an Uber driver—someone I knew quite well —double the cost of the ride. I also bought a house, without a home inspection, accurate survey records, or any understanding of the legal processes. That’s when my housekeeper insisted we go to the local clinic, and they referred me to the hospital. 

There, I had an MRI and was immediately admitted.  By that afternoon, the neurosurgeon came to my bedside to chat. He told me I needed immediate surgery, but assured me he was 100% confident he could fix me. He’s a Cuban-trained doctor who is very well known in Costa Rica. I was then placed on a waiting list for surgery.  

It took 20 days. I was miserable. I wasn’t allowed to shower or walk around by myself, for fear that I might fall. I had fallen six or so times at home and, fortunately, hadn’t broken anything. At one point, I called the American Embassy to report that I was being held in the hospital against my will.  

I even snuck out of the hospital in my flimsy gown —only to be returned by the local police. They eventually had to restrain me to my bed. I would call friends in the middle of the night, begging for help to escape. The neurosurgeon finally expressed his frustration with me to my housekeeper.  

She told him the only solution was to hurry up and operate. One week later, my head was shaved, and I was rolled into the operating room. No one ever explained my true diagnosis, that they would shave my head, or that they would be placing a valve in my head with a tube to my heart —a ventriculoatrial (VA) shunt. They also never performed a lumbar tap. 

I awoke after surgery and immediately felt better. I could walk better than ever, and my feet no longer hurt. I was not restrained to my bed anymore. I remembered almost nothing of the two weeks leading up to my hospital stay, but I had very vivid memories of my youth.  

When it was time to be discharged from the hospital, the surgeon refused to sign my release papers because I live alone, and my new house was not suitable for someone recovering from brain surgery. I remained in the hospital until a place opened up for me at a rehabilitation center, where there was a nurse on site and meals and housekeeping were provided. I spent two weeks there, still with stitches in my head, receiving antibiotics, and walking as often as possible with the help of a nurse.  

The long hospital stays turned my muscles into jelly. It wasn’t until I read my hospital release papers that I learned I had been treated for normal pressure hydrocephalus (NPH), which sounded very harmless.  

The surgeon wanted to see me for a follow-up visit in six weeks. During my follow-up, I had another MRI, and the stitches were removed. By the time I returned to see the surgeon, I had found the wonderful Hydrocephalus Association (HA) NPH support group, and Billy Joel had introduced many people to NPH. I had answered lots of my questions by reading as much as I could online.  

I spoke with friends, each of whom had an anecdote about my odd behavior leading up to surgery. I remember almost nothing. I had considered my life quite bizarre before all of this —I had been working as a crime reporter for an English-language newspaper, surrounded by drama, danger, and exotic people.  

But nothing compares to suddenly losing your mind and ability to walk, only to wake up with a hole in your head and no clear idea how it got there. I’m so lucky the surgeon knew what was wrong, my friends managed my life for me, and I was able to afford an expensive and uncommon operation with a gifted neurosurgeon. 

To my fellow Hydro Warriors: Pura Vida.  

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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About 4 years ago, I began to notice that I was having frequent headaches. I have very severe COPD and use supplemental oxygen, so I just assumed that my need for additional oxygen was increasing, even though the numbers on my pulse oximeter didn’t confirm that.

After a few months, I began to have difficulty walking. My feet felt as if they were magnetically attached to the floor. I felt as if I were falling forward when I took a step. I also felt very unsteady, and when I turned around, I got dizzy and felt as if I was going to fall. 

My primary care physician thought at first that physical therapy (PT) might help–but it didn’t. Then I saw an ear, nose, and throat specialist, but that made no difference either. After about three or four months of nothing helping, she ordered an MRI of my brain. The radiology report noted enlarged ventricles and raised the possibility of normal pressure hydrocephalus (NPH). 

She referred me to a neurologist who scheduled a cerebrospinal fluid (CSF) lumbar puncture drain. He asked that someone record a video of me walking the day before and again right after the procedure so he could review the footage and see if there was a difference.  I then met with a neurosurgeon and scheduled surgery after discussing my options: 

• Do nothing, and most likely end up incontinent and with dementia
• Have a lumbar puncture about every 6 months to drain the CSF 
• Have a ventriculoperitoneal (VP) shunt placed 

Even though the thought of having brain surgery and a hole drilled into my skull wasn’t something I particularly wanted, the alternatives seemed worse, much worse to me. My surgery was set, but ended up being postponed for about 6 months due to COVID. The hospital wasn’t accepting any overnight surgeries unless they were emergencies, which mine was not. Once surgery was finally scheduled in March of 2022, my daughter came to stay with me and was a great help. I stayed one night in the hospital and then recuperated at home for a few days. 

My symptoms improved almost immediately. I was able to walk without lurching, my headaches started to fade, and with PT, I gradually began to feel like myself again. I have a Medtronic Strata II shunt, set to 1.5, but it took a couple of adjustments to reach this setting, which seems to be working well for me now. Because I have several comorbidities (other conditions) —such as COPD, vascular deficiency, osteoporosis, GERD, and high blood pressure —it can be difficult at times to determine whether a symptom like a headache is caused by NPH, COPD, or my blood pressure. 

I was very grateful to have received financial aid to attend HA CONNECT, the Hydrocephalus Association’s (HA) National Conference on Hydrocephalus, in Tampa in the summer of 2024. There, I met many people like me, living well with NPH, who are involved in advocacy, education, and outreach to bring awareness of NPH to others. 

Prior to the summer of 2021, I had never heard of NPH, and none of my friends or family had heard of it either —until I was diagnosed. But now, with Billy Joel recently being diagnosed, I hope there will be much more awareness of this condition—especially since up to 5% of people diagnosed with dementia could have NPH. 

I’ve become involved in advocacy through HA because I feel that it’s important for our elected officials to hear our stories, to know how living with NPH affects our lives, and how research funding benefits the entire hydrocephalus community. 

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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I was originally diagnosed with Parkinson’s almost 4 years ago. I had been experiencing difficulties with balance and bladder urgency. Before my symptoms started, I had a career in sales and traveled nationally 5 days a week for years.  But eventually, traveling and working became a greater challenge for me. After speaking with my internist, he ordered an MRI. The MRI showed enlarged ventricles filled with fluid. He did not mention normal pressure hydrocephalus (NPH) but told me a little about shunt surgery and referred me to a neurologist.  My brothers are physicians and were optimistic about shunt surgery. 

This optimism did not last long. My neurologist, who is a highly regarded Movement Disorder Specialist, was not concerned with the MRI.  Instead, she did a 15-minute exam that included activities such as tapping toes and fingers and walking up and down the hall. After the exam, she diagnosed me with Parkinson’s. I did not know what NPH was, but being told I had Parkinson’s was a gut punch for my family and me. My neurological degeneration continued at a fast pace. Soon, I was terminated from my job as I had greater difficulty performing. I decided at 69 to retire.   

My neurologist never did follow up on the internist’s request for the drainage test. She was, and still is, 100% sure I have Parkinson’s.  I changed neurologists after over two years of advocating for myself. It took so long because I encountered reluctance to contradict the diagnosis of my former neurologist and her opinion that NPH was not real. 

I was eventually referred to a new neurologist who performed a spinal tap, with a physical therapist to document my symptoms before and after the spinal tap. We presented the results to Dr. White at UTSW who agreed I was a good candidate for shunt surgery. His group conducted additional analysis and testing. The effects of the drain were instant. I was able to walk, speak clearly, and even skipped around the room with my granddaughter. The happiness of my wife moved me. I had not realized how much trouble I was in due to the progression of my symptoms. Three months later, I was scheduled for shunt surgery.  

I am now 6 months post-shunt surgery and doing very well. My NPH symptoms have improved, though I am not cognitively at 100 %.  Dr. White, at my request, referred me to a physical therapist and cognitive therapist to aid in my recovery. In addition, I am able to drive again, attend daily religious services, and attend a study group.   

Most important for me has been exercising and building a community of friends. I was fortunate that the Parkinson’s community was very supportive. Through this community, I found Rock Steady Boxing, which is a Parkinson’s physical therapy (PT). This has become an important part of my life. I attend classes three days a week to exercise. I have not found an exercise program similar to this in the NPH community. I was referred to Rock Steady by the therapist I saw for Parkinson’s, though I found out she does work with NPH patients as well. 

Also, the Parkinson’s Voice Project, a nonprofit that helps people with Parkinson’s regain and retain their speech and swallowing, has helped me get my voice back, both physically and emotionally. I learned through this process, most things were covered by Medicare and my supplemental insurance, except for Rock Steady Boxing.   

Through this journey, I have learned to take control of what I can, and that is my advice to others on the same journey. Do not waste time with things that you cannot control. I also look for opportunities to help others. Post-surgery, my advice to others is to advocate for yourself. Reach out to family and friends. Work on yourself, physically, cognitively, and spiritually every day.  I look for inspiration in the world and people around me.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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Hi, my name is Diane.  My journey with normal pressure hydrocephalus (NPH) began two years ago when, at age 70, I began to experience symptoms.   My husband of 25 years, Alan, has been very attentive and supportive during this time.  He’s a psychotherapist and works out of an office in our home.  

In early 2023, I was undergoing physical therapy following a left knee replacement.  However, I plateaued in my progress and was struggling with severe falls and incontinence.  Initially, we thought it was from the knee replacement, but my physical therapist recommended I see a neurologist for further evaluation.    

After two visits, the neurologist suggested testing for possible NPH and referred me to a movement neurologist.   Although the movement neurologist didn’t think I had NPH, they recommended that I see a neurosurgeon specializing in NPH for a second opinion.  

The neurosurgeon carefully reviewed my history, listened to my symptoms, and observed my condition. He determined that NPH was a likely diagnosis and recommended a lumbar drain trial to assess whether a shunt could help. If the trial proved successful, the next step would be surgery to place a ventriculoperitoneal (VP) shunt.  

He issued an order for the lumbar drain trial.  After that very difficult and important test, the neurosurgeon confirmed a definitive diagnosis of NPH.  After the lumbar drain trial, I had another appointment with the neurosurgeon.  He is highly skilled and has had years of experience working with NPH patients.  I had surgery to place a VP shunt in November 2023.

I am recovering well since my surgery, though progress is gradual. After completing six months of physical therapy, I’ve moved from using a walker to a cane. While chores and other activities remain challenging, I’m seeing improvements as I get stronger through exercise, bit by bit.   

Alan and I have a lively 3-year-old dog who keeps us active, though I do regret that I am not yet able to take normal walks with him.   I can cook small meals a little at a time, and I’m grateful for the small moments – like sitting in the backyard with our dog.

Despite the slow pace of my recovery, looking back on my journey I’ve made significant progress.   Alan and I are proud grandparents of two lovely little girls, and my stepdaughter and son-in-law are truly beautiful people, both inside and out. 

Though it hasn’t always been easy there are blessings and challenges along the way.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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After a few falls, I went to my doctor where they ruled out several problems. Then, they proceeded to ask me what I thought. This was my first experience of experts expecting ME to diagnose and treat myself.

Unfortunately, I had to initiate discussions with my doctor and physical therapist to develop a plan for my treatment and recovery. I advocated for starting physical therapy (PT) as the initial step. Despite three months of dedicated efforts with my supportive physical therapists, my balance showed no improvement. Subsequently, I decided to seek additional evaluation and testing from a neurologist. While my journey with NPH has had its challenges, I remain hopeful that more primary care doctors will become familiar with NPH symptoms, thus helping patients like me avoid the early frustrations I encountered.

My neurologist ordered several tests and referred me to neurosurgery. Upon hearing this, I thought to myself, “Neuro…. SURGERY? Brain surgery? Oh my gosh!”

After undergoing a lumbar puncture (LP) and another MRI, I relied on insights from the HA Normal Pressure Hydrocephalus (NPH) Network Facebook group to know that I should record a video of myself walking after the procedure. This turned out to be crucial. Following the lumbar puncture, there was a significant improvement in my walking ability. However, the improvement was not evident until the following day, and unfortunately, it had disappeared by the time I had my follow-up appointment with my neurosurgeon. Without the home video, I might not have been recommended for a shunt.

By the time I had my follow-up with my neurosurgeon, my symptoms were rapidly worsening. I noticed a decline in mobility occurring almost every few days, prompting me to rely on mobility aids such as a cane and later a walker. Additionally, I experienced frequent urinary urgency, which disrupted my sleep, leading to waking me up every two hours.

Alongside disrupted sleep, I struggled with anxiety, depression, fear of falling, and fatigue. Constantly needing to plan my movements and activities became exhausting. Simple tasks required careful consideration; questions such as “Do I need my walker?” and “Can I move from room to room while holding onto furniture?” became routine. Furthermore, I had to ensure my walker would fit in my car and have an adequate supply of continence products for outings.

Additionally, I had to consider the energy required to go out and enjoy my time with family and friends.

Fortunately, my shunt surgery went very smoothly. Much to my surprise, I experienced minimal pain, aside from occasional abdominal twinges that persisted for several months. Recovery from the placement of the ventriculoperitoneal (VP) shunt was much easier compared to my hysterectomy several years ago, which required 6 weeks of recovery. I was feeling better within a few days after my shunt surgery!

I was angry though that my symptoms did not immediately disappear post-surgery. Despite being two weeks post-op, I still felt unsteady and relied on the walker. To cope, I began seeing a counselor on Zoom to avoid burdening my husband with my concerns.

After two weeks of continued reliance on the walker, I insisted on seeing the neurosurgeon. His physician assistant (PA) explained that the brain needed time to heal, and it was their policy not to offer adjustments or therapies until a month post-surgery.

Finally, at the one-month mark, they adjusted my valve setting from a four to a three.

I am thankful for the Facebook group, where I could ask questions and learn from the experiences of others living with normal pressure hydrocephalus (NPH). When I inquired about the valve settings, members explained that a lower number indicates that the shunt will allow more fluid to drain, while a higher setting restricts the flow of cerebrospinal fluid (CSF).

Also, at the one-month mark, I was cleared to begin PT. Fortunately, I found a neurologic physical therapist (neuro PT), a subspecialty that I hadn’t known about before. During our initial appointment, she asked about my goals, and I expressed my desire to attend my son’s wedding in November without relying on my walker.

To make a long story short, by October, I was able to stop using my walker. I danced at my son’s wedding and even traveled overseas alone in March!

Now, at 64, a year after shunt surgery, I am fully independent, have traveled abroad twice, and resumed my hobbies (theater, ESL, taking care of my granddaughters). Life is great!

Nobody knows what the next chapter will bring. Hydrocephalus is a lifelong chronic condition, and there may be challenges along the way. However, I am determined to live my life to the fullest!

I’d like to end my story with some advice for anyone reading this. First, educate yourself about your diagnosis. Books such as “Normal Pressure Hydrocephalus” by Adam Mednic, PhD, MD or “A Life Not with Standing” by Chava Willing Levy were helpful for me. Additionally, it’s okay to get a second opinion if you feel your current doctor isn’t the right fit for you.

As you navigate these medical appointments and consultations with specialists, having a trusted companion to accompany you to appointments can be immensely helpful. They can take notes, ask questions, and support you throughout your journey.

Remember, it’s ok to ask for and receive help. It’s also ok to acknowledge your fears, grief, and depression. Seeking professional assistance is a courageous step towards healing.

Take advantage of the resources available to you, both locally and through organizations like the Hydrocephalus Association (HA).

Lastly, never forget to seize the day – carpe diem!

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

I saw many doctors and underwent many tests. After I was finally diagnosed, I reviewed an MRI taken much earlier in the year, in February 2005. In the middle of the report, it said, “Do not rule out hydrocephalus.” I hadn’t read the report before nor had I heard of hydrocephalus. I guess the doctor who did originally read the report did not pay much attention to that line.

In early 2005, my symptoms worsened at a rapid pace. As the months passed, I had to hold on to walls when I walked or hold onto my husband or whoever was nearby. A friend told me of a Johnson and Johnson commercial she had seen and said it looked like what I was going through. I requested the information they were offering, and at the same time, I made an appointment to see a new neurologist.

In October 2005, I truly self-diagnosed myself after reading the information from Johnson and Johnson. I kept the appointment with the new doctor and took the MRI with me that was taken in February. He told me I had NPH. I had never heard of it and mispronounced the word for many days after that.

My doctor recommended a neurosurgeon in our area, Dr. Greg Zorman. On December 16, 2005 he performed my surgery to insert a shunt and Medtronic’s programmable valve. I am happy to report that it has given me no trouble after all these years. I am sharing my story because I have read that some are not convinced that shunts are an effective treatment for NPH.

I did have to learn to walk again and spent around three months in physical therapy. Each week I became stronger, and on March 20, 2006, 13 1/2 weeks after my surgery (a date I will never forget), I walked without my walker.

I feel so blessed to be coming up on 18 years since surgery, and I have still not had any problems with my shunt. Today I am a very active, independent senior, and I hope my life continues on this track.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

In April of 2022, at the age of 79, I was diagnosed with normal pressure hydrocephalus (NPH). It was a complete shock because I had never heard of the condition and didn’t know that it existed.

For about two months prior to my diagnosis, I was experiencing symptoms associated with NPH. I felt very tired. I had severe headaches with pressure in the back of my head. I could not lift my foot because it felt like a heavy brick. I am a walker and usually very steady on my feet, but all of a sudden, I felt very unsteady. To be safe, I would hold onto a wall when I walked or another person that was walking with me. Being an active person, I realized that something was off with my well-being.

I met with my primary doctor, and she quickly sent me to a neurologist. The neurologist checked out my gait (my walking) and ordered an MRI. Within a few weeks, I had an appointment with a neurosurgeon who told me that it looked as though I have NPH.

My surgery was then scheduled for a couple of weeks later. The surgery would place a medical device called a shunt. The shunt drains the excess fluid, also called cerebrospinal fluid (CSF), from my brain to another part of my body. A few days after surgery my walking improved, and my headaches were gone. I feel very lucky that my doctors caught my condition early and were proactive.

I’m grateful that I had early detection and hope people learn from my story. The Hydrocephalus Association (HA) and its Community Networks, also known as support groups, have been a great support system and I have found it extremely helpful in guiding me through this experience.

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.