By Tom Smith, HA Adult Services & Outreach Coordinator
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.
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.
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 firstname.lastname@example.org indicating your level of commitment. We will be tremendously grateful for your help.