Wednesday, April 22, 2009

Grandmother Mary and Inherited Diseases

My Grandmother, Mary McHutchison Wilson Chapman, in Palo Alto, California shortly after the birth of my sister.

When I was in my teens my father's mother, my grandmother Chapman, came to live with us. She had been widowed for many years, was in her seventies, and was now unstable on her feet. She'd had several falls. My father decided it was best to bring her to California from Alabama.

At some point she was diagnosed with Parkinson's disease, but there wasn't much treatment for it in those days. One thing I remember so clearly was how her walking deteriorated as the months went on. She would try to walk and it would look as if her foot was stuck to the ground. She did a sort of hesitation step to get it going. Later, dementia was added to her ailments and when she was unable to walk at all my Dad found a nursing home for her where she was able to get quality care for the last months of her life.

But that walk. I have remembered it all my life.

And then, in the last few months here in California I have seen it again. In my father. He doesn't have Parkinson's disease. He's been diagnosed with dementia. Why is he losing his ability to walk and doing that strange hesitation step his mother had done forty years ago?

I asked his gerontologist why his dementia would affect his walking. I mentioned that strange hesitation step his mother had done that he was doing now. Nothing. No response. Go away, don't bother me.

And then, when we took Dad to a second doctor about another issue, the new doctor mentioned three words and shook his head. I had to ask him to repeat himself so I could write it down. "What did you say?" I asked. "Normal Pressure Hydrocephalus," he said, and added; "but I'm just speculating."

So I looked this disease up on the Internet. Memory loss is one of the symptoms, and difficulty in walking is another. The Web site eMedicine Health says another is: "Difficulty taking the first step, as if the feet are stuck to the floor." That describes his walking problems exactly. And the Web site mentions that this disease is often misdiagnosed as Parkinson's disease and/or as Alzheimer's disease.

We don't have all the tests back yet, so we can't say for sure that my father has the same disease his mother faced at the end of her life. NPH wasn't identified until 1965, so it would have taken an extraordinary physician to recognize it in my grandmother at about that same time. Still, if NPH is the diagnosis for my father, many of my questions about his own symptoms will have been answered. We will also be able to make better decisions about his medications and his treatment options.

One thing it has taught me: don't be ashamed to ask your physician questions and don't be afraid to ask another doctor those same questions if you aren't getting any answers.

Both my sister and I need to know if this disease is in our family DNA. If I start acting confused (more so than usual, that is) my family is definitely authorized to send me in for a spinal tap.

My big sister with Grandmother Chapman in Palo Alto.

The one thing I cannot answer is the larger question: why is my father being forced to suffer this after a life of service to others? That is a question that has no answer. So I'm stuck with the practical things I can solve and do: where to send his prescriptions, what kind of nursing care will he hate the least, and whether he should be buried in his favorite hat. He has said several times to bury him in his red hat from Ascension Island (he was stationed there in World War II). I want to do as he asks. But I've been thinking I might want that red hat near me, after he is gone.

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