A mother, a doctor, and what's her disease again?

I have had the honor of meeting Dr. Patricio Reyes, who is now director of the Alzheimer’s Disease and Cognitive Disorders, Neuropathology Research Laboratory and chair of the Karsten Solheim Dementia Research, Barrow Neurological Institute, Saint Joseph Hospital Medical Center, Phoenix, Arizona. He is a graduate of Neurology at the UP College of Medicine, who visits the Philippines once or twice a year determined to set up some kind of research facility here. Until then, however, he meets people and gives talks. I went because my mother has Alzheimer’s Disease (AD) and I do not really know much about it. I went for me to understand the disease better. My mother does not need the new knowledge I acquire. She is happy enough with her current definition and perception of the world.

What did I learn from attending the lecture? AD was discovered in 1906 by Alois Alzheimer, a German neuropathologist who described changes in brain tissues of a woman who died of an unusual mental disorder. I picked this information up from one of his Power Point slides. It led me to ask: Do people die of AD? No, Dr. Reyes, said, they do not. Most of them die of pneumonia. That to me is the terrible thing about AD. It is so damaging that it eventually transforms a person, changes her/his personality completely, but it does not kill them. You think I’m strange? Try to imagine your parent converted into a total stranger who doesn’t know you, maybe then you will understand.

How do you know if your parent has AD? Dr. Reyes says check the ABC of medical conditions. First, Activities of daily living – poor health habits, difficulty handling finances, vehicular accidents, shopping skills, cooking skills, eating habits. Do you see any changes in any of these activities? If you do, your parent may have early AD.

Second, Behavioral abnormalities – any changes in his/her behavior? Does s/he forget things such as job skills? Does s/he have sudden mood swings? Does s/he put things in strange places?

Finally, Cognitive impairment – changes in personality, becomes less instinctive, demonstrates some impairment.

Oh my God, no matter how much I write about AD I can tell you it is difficult to spot not so much because the symptoms are not there but because you – the healthier person – are alarmed by what you see so you are always unsure, uncertain, in doubt.

Dr. Reyes said, "In science you can start with darkness and eventually achieve light." It’s not the same for the family. I only search for comfort in the darkness that never leaves when your mother has AD.

How do you prevent AD? Do mental and physical exercises and hope for the best. If you recognize it early, expose the patient to more art and music. AD confronts us with many societal issues – cultural, economic, political/military, legal, ethical, spiritual, all true but only the family has to deal with those. The AD patient who has crossed the line cannot be relied upon to make any judgments.

I think about my mother in an Alzheimer’s home. The last time I visited her, she looked so happy there. She had put on weight. She had a group of friends with whom she sat and talked. I did not understand them, but they obviously understood each other. Every week I send my mother a masseuse who then reports to me what she has seen. She also says my mother is very happy now, verifying what I see the few times I visit her.

People wonder, why don’t I visit her more often? She no longer knows me. I visit with my children and I can see in her face that she loves them more than me, though I am not sure about the quality of her recognition of any of us. I find when I return home that I am more heartbroken than anyone else. It takes me a bit of time to recover but I must recover because what else is there to do? Sometimes I wonder if I, too, will have AD. It would not surprise me. I have had a stroke. There appears to be a relationship between AD and little strokes.

To date they are not sure what causes AD but they do have more information now than they did before. I think seeing a neurologist should be part of everyone’s medical checkup. I think that will definitely help you spot early Alzheimer’s. Would you adjust to it? I don’t know. I just like to think that if you have it, you’re off the hook. You become the family’s problem. That’s the good thing about having AD. You feel no pain. The pain leaves you and lives with your children. They’re the ones who go to meet Dr. Pat Reyes and listen to his talks.

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