by Madeleine Darowiche
Recently, my mom and I decided to go out for dinner. We had been discussing the 12th National Conference on Hydrocephalus that we attended this past summer and how helpful it was to me and how much it changed me. The conference was the first time I had ever met anyone else with hydrocephalus, so it was an eye opener for me. I was able to see how the hydrocephalus community could come together as one for a cause close to their hearts, despite the age differences. While at the conference, I was able to further expand my knowledge on Normal Pressure Hydrocephalus (NPH), which I knew little about. While we were at dinner, we overheard a man say “water on the brain”, which immediately made my mom and I look at each other to see if we had heard correctly, as it is not every day you hear that said in a public setting. We had been pondering whether we should ask the man about it when we decided to tap him and get his attention. He then confirmed, that yes, he had said “water on the brain”. We then started talking with him and his wife. We learned that he had been recently diagnosed with NPH. He had originally been diagnosed with Parkinson’s, and was going to be put in a wheelchair, but he later switched neurosurgeons. This neurosurgeon he switched to also happens to be the one I go to, and he diagnosed him with NPH. His shunt surgery had been performed earlier that week and he was shortly back to how he was before.
This chance event further ingrained in me the fact that all types of hydrocephalus need more funding and research. Who knows how many other elderly people have been misdiagnosed as he was? This should not be happening, and we should all be advocates for this condition that brings us together, no matter our age. We have all been through so much, but someday, as a community, we will change all of this and discover a cure.
Normal Pressure Hydrocephalus (NPH) is often misdiagnosed as Alzheimer’s or Parkinson’s disease. It is estimated that 5% of dementia cases in the U.S. are misdiagnosed cases of NPH. When we include those numbers with the numbers of diagnosed individuals, that translates to about 375,000 cases of NPH, many of which are undiagnosed. As teens and young adults, that time in our lives – being seniors – is a distant future. But Madeleine presents a wonderful experience of finding common ground across a wide age expanse. If we truly want to raise one voice for awareness and advocacy, tapping someone on the shoulder and hearing their story is a great beginning to learning more about each other and our journys with hydrocephalus.
To learn more about NPH, visit these web pages:
To read more personal stories of individuals with NPH, check out these blogs:
As we continue our interview series commemorating our 30th anniversary, this week we sit down with one of our earliest supporters and a current member of our Board of Directors, Dr. Marvin Sussman. As many of you will recall from an earlier history series interview with Emily Fudge and Cynthia Solomon, Dr. Sussman came to the Hydrocephalus Association (HA) when he received a phone call from Cynthia, one of our founding members, after her son’s shunt failed. Dr. Sussman, then Director of Marketing and Sales at Cordis Neuroscience Business (now Integra LifeSciences), personally called her back and, after they talked, supported the idea for a patient-focused organization for individuals living with hydrocephalus. Since that time, Dr. Sussman has shared his wealth of knowledge regarding hydrocephalus and medical devices to our membership in the form of papers, articles, blogs, and presentations. He has also served on our Board of Directors for 13 years and, in that capacity, has advised on numerous internal projects that have moved the HA agenda forward. Read more
I am now 73 years old. On April 24, 2007, at age 67, I had a programmable ventricular peritoneal (VP) shunt inserted in my brain at St. Michael’s Hospital, Toronto, because I had adult onset idiopathic Normal Pressure Hydrocephalus, also known as iNPH. The diagnosis took at least 2 years to make and involved several medical specialists, some of whom declared my symptoms psychosomatic. Others felt I had hydrocephalus, but that I should wait to be shunted because of the dangers of the operation and the risk that the outcome would not result in significant improvement. My earliest symptoms had been a sensation like that of walking on gum, and progressed to an inability to walk without a walker, uncontrolled urination, difficulty concentrating and understanding complex ideas, and trouble remembering things. Read more
From the travel journal of Gina Barbaro
Entry #1: Planning my trip to Machu Pichu, Peru
Having had a shunt implant just one year ago, I still had lots to learn about Normal Pressure Hydrocephalus (NPH). What limitations might it present for me? Would I be able to travel as I like? Where I want? These were realistic questions for me to contemplate. Although I am doing well at sea level in Baltimore, Maryland, where I live, I wondered if any symptoms would return during an anticipated vacation to Machu Picchu, Peru, where the altitude is 8000 feet. I also wondered if I would be more prone to altitude sickness. Read more
Our history as an association is a reflection of the richness and diversity of the engaged and committed members of our community. That is all of YOU…all of US! As we continue our interview series commemorating our 30th anniversary, we take a moment to hear reflections from individuals around the country who have interacted with the Hydrocephalus Association (HA) and supported HA throughout the years. This week we chat with Angela Lacey. Angela was 44 years old when she began having acute headaches, Read more
This blog submission brings us to the close of Brain Awareness Week. As a follow up to the previous article on the anatomy and physiology of the brain, we would like to continue our learning and explore the terms we so often hear when dealing with hydrocephalus. These definitions are taken from our various educational publications, which are all found primarily under the Education and Support section of our website. Read more
Memorial Hermann-Texas Medical Center hosts a recorded presentation by Dr. Dong H. Kim, director of the Mischer Neuroscience Institute and chief of neurosurgery, detailing the diagnosis of normal pressure hydrocephalus.
In 1984, 6 medical professionals came together to serve as medical advisors to our fledgling association. Our Medical Advisory Board now has nineteen esteemed medical professionals that work closely with our staff to support the educational needs of our members as well as help guide our research vision. As part of our interview series in commemoration of our 30th anniversary, Ashly Westrick, Research Manager, sits down with Dr. Michael Williams, Medical Advisory Board member and co-chair of our recent national conference, “Getting to the Heart of Hydrocephalus”. Read more
Houston’s ABC affiliate KTRK reports on Ron Shillcutt, a Houston resident initially diagnosed with dementia and then found to have Normal Pressure Hydrocephalus (NPH).
Rhode Island NBC channel 10 shares Roberta Healy’s story of being living for years with undiagnosed with Normal Pressure Hydrocephalus (NPH).