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Wednesday, August 5, 2009

It Just Looks Like Dementia

BREAKTHROUGHS

Beating an Insidious Enemy
August 5, 2009

By Melanie Segala
Managing Editor, Total Health Breakthroughs

Do you often worry about Alzheimer's or dementia striking in your later years Perhaps you are even a caregiver for a parent who's already been affected. If so, I'd like to share with you my own family's personal story.  It may give you some insight into a little-known cause of mental decline in the elderly and even the hope for recovery.

My mother -- intelligent, funny, a great conversationalist -- and in pretty good health for her 80 years on earth. That is until the early fall of last year, when she seemed to be going downhill at an alarming rate.

Her short term memory which was fine a few months before, was now almost gone -- she couldn't remember what you told her 5 minutes earlier. Her walking was slow and shuffled -- she couldn't seem to pick up her feet.  Our frequent long distance phone calls which always lasted 30 to 45 minutes were now less than 5 minutes long and always initiated by me. 

She seemed to be losing interest in life and spent far too much time every day napping.  When I would ask her if she took her daily blood pressure medicine, a routine she followed religiously for nearly 40 years, she couldn't remember. 

What was wrong with Mom?  We didn't know, but realized we were losing her fast and had better figure it out soon.  My Dad took her to the GP and after a routine examination which showed nothing unusual, he administered a mental status test.  The results indicated she had mild dementia.  He then did what most docs do and prescribed Aricept.  Still, something wasn't right about this quick and simple diagnosis.  Mom went downhill too fast and dementia usually proceeds at a slower pace.  And would dementia explain her sudden walking problems?

The family was in uncharted territory, but we knew at this rate our mother would be in a nursing home within 6 months.  After thinking it over for a few days, I called her GP and said I wasn't convinced the dementia diagnosis was correct -- I wanted her to have a CT scan or an MRI -- maybe she had a brain tumor or a mini stroke... maybe something more could be done to help her.   

He waffled a bit, saying her age would explain many of her symptoms.  But I insisted and he finally agreed to write her a prescription for a CT scan the following week.

My insistence on further testing was one of the smartest decisions I ever made.

After her CT scan, the results showed that my mother had enlarged ventricles.  Ventricles are the structures on each side of your brain that continually make brain and spinal fluid. If everything is working as it should, the spinal column and brain use the fluid they need and the excess drains from the ventricles and is absorbed by the body. 

But in some people, especially the elderly, the ventricles can become blocked and unable to drain properly.  They then become enlarged with excess fluid and cause pressure on vital areas of the brain.  This pressure leads to memory loss, a shuffling gait and urinary frequency or incontinence.  The condition is known as normal pressure hydrocephalus (NPH). 

One week later my mother was in a neurosurgeon's office to learn what could be done.  He suspected NPH but could only confirm it after admitting her into the hospital for a lumbar puncture (spinal tap).  A large amount of fluid would be removed from her spine to relieve the pressure on the brain.  If she showed improvement in memory and walking after the procedure, surgery would most likely help to relieve her symptoms. 

As he explained, there is no "cure" for NPH, but a shunt surgically implanted into her ventricles would drain the excess fluid down into her abdominal cavity and dramatically improve her symptoms.  In his experience, the surgical shunt has been successful on 98% of people with NPH.

With that news, we forged ahead.  First came the spinal tap.  As expected, Mom showed mild but noticeable improvement afterward in her walking and cognition.  While the results were temporary, we knew the surgery would most likely work.

On February 2, 2009, my mother had the shunt surgically implanted in her brain.  According to the doctor, she came through with flying colors. 

For a few weeks after the surgery, while Mom was home convalescing, she was still foggy and unsure on her feet.   We weren't sure how much improvement, if any, to expect.  But then the improvements started to become noticeable.  About 2 months later, as if by a miracle, my mother was almost back to normal.  Her walking was good, she was interested in life again and aside from losing her train of thought once in a while, her short-term memory was what it should be.

My mother and I have had several conversations in the past few months in which I've explained her physical and mental decline through the fall and early winter of last year and the surgical procedure that saved her life.  I do this because she can remember very little of what happened in that time frame. 

She even has no recollection of my brother and his family driving up from Alabama to New York over the Christmas holidays to be with her and my father.  That's how "far gone" my mother was, and that's why her recovery is so miraculous.

When I shared my mother's story with a good friend who is a case worker in the health insurance industry, she made a comment that gave me pause.  She said, "I'll bet there are thousands of old people in nursing homes right now that have NPH and everyone thinks it's just dementia because they never had further testing."

I think she's absolutely right and that's why I'm sharing this story with you. 

If you have a loved one that's "slipping," don't accept a diagnosis of dementia or early Alzheimer's without further testing.  Insist on a CT scan or MRI -- preferably an MRI -- it's safer and more accurate. If your GP is not receptive to arranging these tests, then ask for a referral to a neurologist or neurosurgeon who understands how to treat this insidious condition.

And importantly, educate yourself about the onset and progression of NPH.  Having the facts might just save your life or the life of someone you love.  Here are a few helpful links to get you started.

http://www.lifenph.com/
http://www.emedicinehealth.com/normal_pressure_hydrocephalus/article_em.htm
http://www.nlm.nih.gov/medlineplus/ency/article/000752.htm

There's one final note I'd like to share with you.  Last December my mother was too ill with NPH to know it was Christmas and enjoy the holiday with her family.  Now, she and my father are making plans to visit us in Florida for the holidays -- I couldn't ask for a better gift than that.   

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