Diagnosis: NPH

No, not Neil Patrick Harris… Normal Pressure Hydrocephalus. I’d never heard of it until Thursday, when Mom finally had her follow-up with the neurologist.

In layman’s terms, what it means is that Mom has an excess of cerebrospinal fluid in the ventricles of the brain, which causes the ventricles to enlarge and press on different parts of the brain. The most common symptoms are balance/gait issues, mental confusion (dementia), and urinary (and occasionally bowel) incontinence. Check, check, check. Dr. O said that the CT scan is not definitive on this, but that since the ventricles do appear enlarged on the scan and Mom has all the classic symptoms, it is by far the most likely cause. And check out this more detailed list of symptoms I found on WebMD.

Symptoms  include:

  • Memory loss
  • Speech problems
  • Apathy (indifference) and withdrawal
  • Changes in behavior or mood
  • Difficulties with reasoning, paying attention, or judgment
  • Walking problems
  • Unsteadiness
  • Leg weakness
  • Sudden falls
  • Shuffling steps
  • Difficulty taking the first step, as if feet were stuck to the floor
  • “Getting stuck” or “freezing” while walking

My mom has had every. single. one of these symptoms over the past year.

Unlike Parkinson’s Disease or Alzheimer’s, there is a treatment for NPH that can sometimes reverse most of the symptoms. But it is very invasive. A neurosurgeon drills a tiny hole in the skull and puts a shunt into the ventricles to drain the excess fluid to another part of the body. The success rate is highest for patients who are only exhibiting the gait disturbances and have little to  no dementia or incontinence. Dr. O said that many neurosurgeons may refuse to do the procedure on someone with my mom’s health issues and advanced dementia. Understandably, I think. If my mom were a decade younger and this procedure had a chance at reversing her symptoms and giving her another 10-15 years of a normal life, it would be worth exploring. But at this point in the game, I think the risks of anesthesia outweigh the possible benefits.

I left the neurology office with my head spinning, wishing with all my heart that my dad (a former anesthesiologist) was still alive to counsel us on what to do.

When I brought her back to the care home after our appointment, we pulled into the driveway and she asked “Is this my place?” I answered in the affirmative. She said thoughtfully, “They picked me up from another place, my friend’s house. I don’t know if I’m ready to be alone here.” Oh no, I told her, you won’t be alone. This is where you’re staying with the other ladies. “Good,” she said.

There is no other treatment for NPH, no drugs that have been found to be particularly effective. So we stay the course, basically. The neurologist is increasing her dosage of the Parkinson’s drug, which may still have some benefit for her balance and gait (so far it doesn’t seem to be doing much), and she’s staying on Namenda in the hopes of slowing the mental deterioration. Dr. O said that it’s likely she will worsen considerably “in a couple of years” and require a higher level of care. But she’s turning 86 tomorrow, she has congestive heart failure, atrial fibrillation and chronic kidney disease (either stage III or stage IV)… and she might only have a couple years left here anyway.

So I’m really just hoping that the drugs will keep her symptoms in check and give her a couple of pleasant  years at this wonderful care home with the friendly residents and caring, compassionate staff.


3 thoughts on “Diagnosis: NPH

  1. I’ve been following you and your mother’s journey as you probably know. She sounds like such a sweet woman. Glad to know there’s a diagnosis. Here’s hoping the medications do their job well.

  2. I would make the same decision you seem to be. It is the most loving and least selfish, it is all about her best interests . That is the most right thing we can do for those we love, sometimes, just let things unfold without invasive procedures. Let the medicines do their thing. There are many smiles and good moments you to will get to have together and that is what life is all about. We can’t hold them here forever…. You are so brave to be the one in charge and you are doing so beautifully……

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