A Life that Might have been Stolen

There is a disease called Alzheimer’s that robs the body of the mind, the soul of its future, and the family of its center. It is slow. It is insidious and just its diagnosis is enough to promise an agony of days dwindling down to mindless loss, leaving all around it to try to hold the center for as long and as best as they can.

There is a condition called NPH, or Normal Pressure Hydrocephalus which means a rise in cerebrospinal fluid (CSF) in the brain. There are three main symptoms that are caused by this condition. One is Alzheimer’s-like memory problems. Another is a horrible shuffling movement as you walk; an inability to lift the feet. It makes walking painfully slow, each step a labor.

The thing is, if you relieve the cerebrospinal fluid – essentially water – on the brain, the symptoms of NPH disappear. Much if not all of the memory problems go away, the labored walk gone.

About two years ago, my parents’ doctor said my father had Alzheimer’s and we began that slippery slope towards darkness. My mother has dealt with it more than the rest of us, watching it, fearing it, being hurt by it. My father was told that this was happening – the feeling being that he should have the right, while he still had the chance, to do what he wants, to get things in order. My father loves to write – it would or could be his chance to write a bit more.

The thought that he might have NPH and not Alzheimer’s was raised. He was tested and the family doctor felt that putting him through a spinal tap and long, slow draining of the fluid to test which condition or disease he had was not advised. The slope downward remained his future. He was tested again, and again the family doctor advised against any procedure.

Because the family doctor remained concerned for both my parents, she finally recommended that they take my father to a neurosurgeon who specializes in NPH. He decided the chances were 50/50, perhaps slightly better. Still, we were advised not to get our hopes up.

A procedure to test what would happen if a permanent shunt was put in to relieve excess water on the brain was done last week, the worst possible week for me as it was right before the national conference I help organize each year. From afar, I listened and heard. When it was done, after 48 hours of this slow draining, my father walked normally for the first time in longer than I can remember. His cognitive abilities were rated much higher than just 48 hours before.

My sister told me over the phone the evening before the conference. My mind was filled with so many emotions – anger at the family doctor for being so sure it was Alzheimer’s, shock and dismay at the thought that the rest of my father’s life might have been stolen from him. So many thoughts. How many others, I wondered, never know. How many people travel that slope into oblivion needlessly?

The anger dissipated quickly. The family doctor has always been amazing to my parents. What she did, and what she didn’t do, was misguided but it was what she believed was best. The shock and the dismay, however, remain. How many lives are lost, condemned, unfulfilled by this common misdiagnosis?

And as the days stretch towards when my father will have an operation to place a permanent shunt to drain the fluid and what we continue to hope will be even more of a reversal of the symptoms, another thought comes to my mind. What was almost stolen, is being returned. The lost chance becomes a new chance. Few of us are given second chances in life; my father has been given one. What he makes of it is up to him. I hope he will begin to write again. I hope he will cherish all the more what he could have lost.

I hope the family doctor will remember this and take a chance. Doctors should not cause their patients pain and suffering, and yet, sometimes in not choosing this path, they cause even more danger and damage.

A life that might have been stolen, has been, or will be, taken back. And still, I am left with the agonizing thought – how many others remain stolen?

Leave a comment

Your email address will not be published.