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Stan_the_Man

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Review for Hydrocephalus Association, Bethesda, MD, USA

Rating: 5 stars  

1986, I was a healthy 55-year-old "rocket scientist, an aerospace-engineering department manager of one of the world's leading aerospace engineering companies, an engineering professor at a major UC campus, a textbook author, an inventor with around 100 patents … and I began clumsily falling on my marathon-training runs, loosing motor coordination, couldn't write coherently, speak intelligibly, my mentation began failing, memory failed to find names, words, facts, my ability to analyze became hopelessly muddled … and I abruptly found myself unemployed. "Early retirement," they called it. I went from doctor to doctor, hospital to hospital including the VA, neurologist to neurologist. I was misdiagnosed for 20 years. I was pronounced as suffering from old age, Alzheimer's or Parkinson's diseases, MS, ALS, and every dementia known. Maybe it's nothing, just a form of hysteria. Malingering! That's it. Trying to qualify for some disability benefit! We know your kind.

Adult-onset hydrocephalus had first been identified in 1964. My symptoms appeared a scant 21 years after the disease was first discovered. Small wonder I couldn't find help.

Eventually I stumbled across an article on line that alerted me to a neurosurgeon at UCLA. He was on the medical advisory board of the Hydrocephalus Association (HA). I was examined, diagnosed, shunted, regained myself, met HA, it's members, programs, and have been a staunch supporter ever since. It's members have formed a magnificent mutual-aid society. For the million hydrocephalus victims in the US, this is the only organization that addresses the needs of all hydro patients. Education, research, patient-support groups for all ages. Nothing else comes close. The annual meeting has become a high point in my year.

I now am an active, healthy 88-year-old HA volunteer, give lectures, peer counselor, community organizer, and lead a full life. My wife and I just returned from the Caribbean, outrunning Hurricane Dorian.

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