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: