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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Second Opinions: Seeking the Help of Another Doctor When Caring for the Elderly

My Dad looking happy recently as he posed for pictures with his long-time friend and barber, Al Galedrige. The men in the shop now help lift my father into the barber chair.

When you are ill, you need a determined advocate to help you through our health care system. You have to be your own GP and seek out answers to your own questions from the specialists your "primary care physcician" refers you to. But when you are ill, you are least able to do this. It is the job of your loved ones to do it for you. This week, I feel I let my father down.

I wasn't there to help him when I should have been.

Six or eight years ago he started to have "spells" where he wasn't sure what had just happened to him. He had all kinds of tests and our mother said the doctors "couldn't find anything." Nevertheless, he was put on a strong dose of an anti-seizure medication. I wondered why. So did his sister, my Aunt Helen, who laughed and said: "If they couldn't find anything wrong: why is he on anti-seizure medication?" I should have gotten on a plane and taken Dad to a new doctor and sought an answer to that question.

When my Mom stopped her after-dinner walks with my father and starting walking by herself, I asked her why. "Oh he isn't walking well anymore. He has osteoperosis you know." I said to myself: osteoperosis doesn't keep a person from walking. What's wrong with him? I should have gotten on a plane and taken Dad to a new doctor and sought an answer to that question.

When he started showing signs of dementia, my sister mentioned it to me. "But he writes such great letters to me," I said, busy with my own problems and happy to be in denial. "Yes but there is something wrong with him," said my sister. It wasn't until later that I learned my mother was writing the letters and my father was copying them out for me. Why didn't I get on a plane and come out to California and take my father to a new doctor? What was my mother trying to hide by writing his letters for him? I should have found out.

When I finally did come out to California to try to solve some of these problems I repeatedly asked his doctor, a gerontologist, these questions. If he has dementia: why is it impacting his walking? When I noticed the strangeness of his gait, I mentioned to his doctor that his mother, my grandmother, had done that same, odd, hesitation step in the last years of her life. She too had been diagnosed with Parksinson's disease and she too had developed dementia. I asked about the anti-seizure medication. To all of these questions, I received, over and over again, patronizing answers from my father's doctor. And he never really answered any of them! He knew better than I and he wasn't interested in any observations I had to share or questions I wanted answered.

When finally, this same physician refused to address a particularly annoying cyst on my father's hand ("He'll need a hand surgeon and it just isn't worth it. Leave it alone."), I made an appointment with my mother's internist to look at the cyst, knowing the internist was in a large group and could refer us to a doctor who could remove it. First of all, I learned the cyst can be removed by a dermatologist, so out went that proviso. I also addressed my unanswered questions to this new physician and much to my astonishment he told me that my father's cluster of symptoms indicated a specific disease, which affects the brain and which, if addressed early on, can be treated. "I'm just speculating," said the new doctor. "But I want to send him to a neurologist." When I told him that my grandmother had had similar symptoms forty years earlier, he nodded his head. "We think it can be hereditary," said he.

Now my father is almost ninety and the chances that he can be treated are slim. I've read about the disease on the Internet and treatment involves complex surgery, which he might not survive. I'm saddened and sickened that it took so long for me to seek answers to the nagging questions I had since his first "incident" of confusion and since the onset of his walking problems. Where was I and why wasn't I serving as his advocate?

The only thing I can do now, other than kick myself around the block, is to apply this lesson to the life that remains to my father and to the lives of my other loved ones and to myself. Don't be intimidated by a doctor who patronizes you. If you aren't getting answers to your questions, find another doctor who will answer them for you. Doctor shopping is perfectly okay. It is your life and the lives of your loved ones at stake and you can be as obnoxious as you want in your search for truth.

In fact you should be. Any doctor who doesn't help you in your search, should be fired, which is just what each of us is still able to do in this great land of ours. One thing there is not in America: there is not a shortage of good doctors.

I'm still angry at myself. But the new information I have, has at least given me a reason to renew my efforts to help my father. He can't do it. So my sister and I must do the best we can to help him in the years ahead..

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