Meet Marge: An Adult

Appeared in the foundation's newsletter, LIFE~LINE, Spring 1999

1984 began as the best year of my life. I was happily married, had a successful career, and our daughter had just started college. By Spring - things began to change. I had my first seizures and was diagnosed with Normal Pressure Hydrocephalus. The neurologist prescribed Tegretol for the seizures and advised us that no treatment was necessary for NPH, In August; I was hospitalized for the first of many episodes of "major depression," which occurred over the next 2 years. At each admission, my neurologist reaffirmed that there was no relationship between the NPH and my worsening depression and self-destructive behavior.

I had continuing psychotherapy, was tested on various and multiple psychiatric medications and even electroconvulsant therapy, but my condition continued to deteriorate, I could no longer work, drive, or function adequately as a wife or mother, My family was told to accept the fact, that I would, most likely, "end up in the back ward of a state hospital."

Luckily, I was in a teaching hospital and an observant resident noticed the relationship between the timing of the NPH diagnosis and the onset of my other problems, She consulted with a different neurologist and neurosurgeon - who all agreed that based on my continued deterioration, shunting was a viable option. And I was given a miracle. The shunt placement resulted in an almost immediate abatement of my terrible symptoms.

Unfortunately, the story doesn't end there. I had multiple shunt failures, infections, even a recall (on my shunt), and each time, the terrible symptoms reoccurred. But in 1987, I had surgery to replace my VP (Ventriculoperitoneal) shunt (due to my many problems with it), to a low pressure VA (Ventriculoatrial) shunt. With the exception of 2 minor revisions - there have been no problems - and no hospitals since then!

I was originally told I had NPH due to Aqueductal Stenosis, but a PET scan showed this not to be the case, so the cause of my condition is unknown. I remain disabled with seizures and residual cognitive deficits.

I am fortunate to have had a core group of doctors who went to bat for me, researched all avenues to treat me, and were willing to sick with me for the long haul. I'm especially glad that I was in a teaching hospital - otherwise, I would not have had that new resident come to my aid, and the excellent medical care I received!

Also, without the love and care of my family nothing could have helped. As with many of you - I tried to obtain information concerning hydrocephalus... but found there was very little to be found. I also wanted to make contact with others, but I live in rural area and thought that desire would have to go unfulfilled. However, one day while watching a talk show, a stand-in hostess was advising the audience about her hydrocephalus. I wrote to her at the television station and soon received a letter from her - and we've been friends since.

It was soon after this that I was at the store and picked up one of the women's magazines (like Women's Day) as they had an article in there about orphan diseases. I took it home and read it, and at the end of the article, it gave several places that you could contact in order to find a group that you would be able to put you in touch with other groups. I wrote to National Organization of Rare Diseases (NORD), and they responded immediately, giving me the address to NHF. I was so surprised and happy that I immediately sat down and wrote to them. In turn, they sent me some valuable information and also gave me the name of their adult contact (Debbi Fields.) I sat down and wrote Debbi a letter, we started corresponding - we've even been able to meet face-to-face. Debbi has helped me learn to live my life fully.

I recently took some computer classes and bought a computer so that I can connect with others - and I'm so very glad that I did this.

My sincere desire and wish is a cure and/or some further advances be made with regard to hydrocephalus. I'm happy to report that I'm doing my part - as I've been accepted in the patient study being conducted at Case Western Reserve University.