Monday, February 20, 2012

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?

10 comments:

Rachel said...

Paula,

While I understand your anger, and while it is entirely justifiable, I would like to suggest you focus on enjoying your father and his renewed lease on life.

Doctors are human, they make errors, and they have limited knowledge.

May you enjoy many more years of life with your dad...

Rachel

A Soldier's Mother said...

Hi Rachel,
As I wrote, "the anger dissipated quickly" and I am left with gratitude that my father will hopefully have a second chance. I wrote this because I believe this is widely misdiagnosed and I hope others will investigate. Alzheimer's is hard enough for the family - but to have the family suffer needlessly, to have someone condemned to the slow and steady loss of all they know, in confusion, etc....is just so tragic. I'm grateful to the doctor for taking the step of recommending they take my father to this specialist, grateful they found out that this is probably NPH and can be treated and yes, grateful to have had a long, amazing conversation with my father in which he truly interacted with me, truly talked TO me and didn't just listen. I am overwhelmed with listening to him talking, sharing HIS thoughts, not just listening to mine. Thanks for your kind wishes...thank you.

Dave said...

I am sure that the doctor will remember. They don't see less common cases often, and learn to attribute symptoms to the commoner cause. Many is the case where the "cheeky" medical student saved the day by persuading his seniors to check for that rare condition he had read up the night before!

Ann said...

Paula, I am so pleased that your father was given the opportunity, albeit later than might have been, to have a second chance - Thank G'd it was successful.

And thank you for drawing our attention to this condition whch I had never heard of until I read your post - the more people who are aware of it the greater the chance that a misdiagnosis won't occur.
Ann

Baruch Dov Bear Wohlmeuth said...

There is research that shows that having unrefined kosher coconut oil is extremely good to help reverse this.

Agneta said...

Dear Paula,

I'm following your blog quite a while and have never left a comment yet. But after reading this post I just wanted to whish you and your father (and the rest of your family too ;)) all the best for the future. Glad to read that you father got his second chance!
Keep up your good work!
All the best,

Agneta

YajB (The Woolley MomMyth) said...

B"H

Anonymous said...

about 18 years ago my dad was diagnosed with a brain tumour. .. non-cancerous and it came out - so we were very lucky and he did get a second chance life .

today my father has been diagnosed with so many 'things' that this second chance doesn't feel like 'life' any more.

if the alzheimer's he has been diagnosed with could be reversed and the NPH be a factor for him... then maybe just maybe my mother can get a second chance at life.

thank you for sharing.

Varda Meyers Epstein said...

This is an amazing story!

Did this happen here in Israel? You can understand how doctors in America would want to avoid considering NPH for fear of ending up with a malpractice suit, but in Israel, it would have had to be something else. People just can't make any money from malpractice suits in Israel.

The doctor must have really been concerned about the possible side effects of the procedure.

I imagine if someone was already frail, a spinal tap could offer a breach for introducing infection? There must be other good reasons for your father's doctor's concern.

How frequently does NPH occur compared with Alzheimer's?

At any rate, WOWSER! I am really happy to read this happy-ending story. I hope that your father's health will continue to improve and that he will have 120 years of writing! Refuah Shleima.

Great story.

beachbirdie said...

I discovered your blog by accident while following a link on the Israel National News page.

Your father's story is heartening! I have been watching my mother slip away from us for almost two years now; her doctor says she does not have Alzheimer's, but some kind of dementia without a name. I have begged for tests for a couple of simple conditions that can cause her symptoms but have continually met resistance. I understand your sorrow and anger at seeing your father's life nearly stolen. I am still living it. Here in the USA we don't have many options to bypass our doctors and I have almost lost hope.

I am so glad things turned out well for your family.

Copyright Statement

Everything on this site is protected and copyrighted according to Israeli and international laws. Violators WILL be prosecuted.

For permission to use pictures or text from this site, please write to: info@paulasays.com.