Normal Pressure Hydrocephalus (NPH) Outreach Initiative – A Call for Action!

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By Tom Smith, HA Adult Services & Outreach Coordinator

The Need

Best estimates indicate that there are 350,000 persons in the United States living with Normal Pressure Hydrocephalus (NPH). Roughly five percent of persons diagnosed with Alzheimer’s or Parkinson ‘s disease actually have misdiagnosed NPH. NPH mostly affects people over the age of 55 and quite often looks like the results of the natural aging process.

Of the tragedies surrounding NPH, lack of correct diagnosis is perhaps the most regrettable and preventable. As an HA staff member who deals most often with NPH questions, the single most consistent thread in all of those conversations is the regret and anger felt by people with NPH or their loved ones for time lost and the unnecessary agony of watching a life slip away.

As a child of a person with NPH I can attest to this. Even though my father was diagnosed and shunted, not a week passes when I’m not brought up short by the thought of “what if”. What if a passing neurosurgeon hadn’t walked by the examination room noted my father’s gait and told the GP to look into NPH?

This happened after being misdiagnosed for almost a year and a half. It’s an appallingly slender thread of circumstance upon which to hang a life. The obvious next step is to spread awareness of NPH so that its diagnosis is no longer a matter of luck, but of procedure.

The Call

This brings us to the NPH Outreach Initiative. The initiative is a focused effort to get information about NPH into the hands of elder care professionals across the country.

NPH outreach brochuresWe have new brochures and information aimed at getting the word to elder-care professionals and we need your help getting it into their hands.

Do you know of an elder care facility in your city/town/neighborhood/block? Would you be willing to hand-deliver educational materials regarding NPH to such a facility; or, pass along to us contact information of the facility so that we could mail to them directly?

If the answers to any of these questions is ‘YES’, please let us know by contacting us at tom@hydroassoc.com indicating your level of commitment. We will be tremendously grateful for your help.

5 Comments for : Normal Pressure Hydrocephalus (NPH) Outreach Initiative – A Call for Action!
    • NancyDrew
    • September 16, 2011
    Reply

    I became familiar with NPH Hydrocephalus years ago when I became a member of the Hydrocephalus Association of CA. My 5 year old daughter had been diagnosed with hydrocephalus after having a non-malignant brain astrocytoma (tumor) removed in 1986. Through the newsletters and website I learned quite a bit about the various types of hydrocephalus including NPH. To my surprise, a local businessman’s father recently began to suffer from symptoms that sounded eerily like NPH, but had been diagnosed with dementia. At first my business acquaintance wasn’t too interested in my info, which isn’t abnormal as most people (especially those who haven’t been involved in the medical system) believe “everything” their physicians say. Those of us who have been involved in the “system” understand that our doctors are wonderful but are not “all knowing” and have discovered important information from well researched “lay folk”! Nonetheless, with some prodding and the great literature from the Hydro Assoc on NPH, he had his dad re-evaluated. He was diagnosed and shunted for NPH and finds his gait and “dementia” improved. Because of this experience I realized how CRITICAL is is to get this information out and into the hands of family medicine, internal medicine and geriatric medicine practitioners who are the first line of defense for the senior population, a population that I’ve since learned are more likely to have their NPH diagnosed and treated as DEMENTIA than to have it properly diagnosed and treated as hydrocephalus. IMAGINE what would happen if everyone reading this would donate the time (can you spare 30 minutes a week) to hand deliver NPH literature to EVERY family/internal/geriatric medicine practitioner in your area. Just ONE a week reaches 52 different practices a year!!! I’m In..How about You?

    • Stan White
    • September 16, 2011
    Reply

    I have NPH. A CT brain-scan report for an entirely different reason came with the radiologist’s note: “enlarged ventricles suggest possibility of NPH..” NPH? What’s NPH? I’d never heard of it before. My neurologist flatly stated that I didn’t have NPH. I went on the web, found Pat Sabin’s remarkable site, and my self education began. After a month of study, the conclusion was inescapable. I gathered my medical records, wrote the basis for my self diagnosis and sent the bundle to the NPH Research Group at UCLA headed by Marvin Bergsneider. Within a week, Bergsneider’s office contacted me, and after a preliminary visit I entered the UCLA hospital for a 5-day evaluation in May, 2007. What a revelation! I eagerly signed on to be part of a research study. The shunt was installed in July, was modified in August, and my old self is back. Completely! Coordination, gait problems, incontinence issues, mentation difficulties, slurred speech, handwriting reduced to illegible scrawl (not that it was ever all that great) are all gone. I return for an annual followup and am pleased to report that life has been wonderfully restored.

    Unbelievably, my original neurologist still refuses to believe that NPH was the problem. However, my GP greatly appreciated what he was able to learn through this adventure. Many people have referred possible NPH-affected people to talk with me just because they witnessed my before-and-after metamorphosis. Most did eventually receive a shunt, having varying degrees of success. Some had simply waited far too long and had suffered significant neural damage. As with most medical issues, early diagnosis and treatment are the keys to success.

    I have offered to meet and speak with anybody or any group who feel they may benefit, but have had only a half-dozen individual takers in over four years.

      • Sue
      • September 6, 2016
      Reply

      what modification was done to your shunt? I have a follow-up appointment with my surgeon to schedule surgery to replace a part of the pressure valve on my shunt. I received my shunt Janiary 27 and have had several adjustments, but none have helped my symptoms. I am hoping this will help.

    • Fred
    • September 3, 2011
    Reply

    I have congenital Hydro it went unchecked for yrs In 2009 My CT scans showed enlarged Ventricles and noticing the painful headaches I had spinal taps preformed all my Opening pressures were elevated I went w/o really any treatment plans either to shunt me or not. Needless to say I was In the fight for my life. Until one yr ago a neuroscience team decided to listen to me and take my concerns seriously.

    Fred

    • Hilary
    • August 18, 2011
    Reply

    I have NPH, and am very pleased that you are taking on an NPH advocacy role. I was diagnosed only because I showed enlarged ventricles on a CT scan for migraine symptoms, and my neurologist was both knowledgeable and vigilant. I estimate that it took 6 years from the time I first started exhibiting symptoms and when I received a shunt. Thank you!

    Hilary

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