Speaking Swahili with Beezlebub

Dear Readers,

Many years ago (25 to be exact), when I was studying Swahili in Kenya as a Peace Corps Volunteer, I had a recurring dream in which I would call my father and only be able to speak in that language. I understood his English, but I could only answer in Swahili.

I think that’s what Alzheimer’s feels like.

And, yes, maybe it was some sort of metaphorical premonition.

Beau got it. Will I get it? This disease which turns communication into a foreign language? No one knows. AD remains a medical mystery. Stuck in a dream-like state.

Yesterday, the New York Times ran a story on how a promising drug in a clinic trial had failed.

That drug, called bapineuzumab—-which sounds way too much like Beelzebub for my taste—apparently “did not improve either cognition or daily functioning of patients compared to a placebo.”

Mbaya kabisa. That’s Swahili for “very bad.”

Wait, you readers say! Nancy Stearns Bercaw doesn’t actually have AD.

Or do I?

On Monday, I had a very frank conversation with Dr. Matt Baker, who was my father’s neurologist. I told him about my memory concerns—-is it a perfect storm of menopause, motherhood, a side effect of antidepressants, and grief?

Maybe. Maybe not.

Dr. Baker was of the mind (tee hee) that I should look for a clinical trial for people who are genetically pre-dispositioned for Alzheimer’s. Start getting some kind of meds NOW before AD is a reality. The point is to keep the plaque from developing, or to help the body to flush it, before I develop full-blown symptoms–that is if I am going to. I may not.

The shortcoming with the clinical trial on Beelzebub was that “the patients in the new trial — 1,100 Americans with mild to moderate disease — all had a gene called ApoE4, which raises the risk a person will get Alzheimer’s disease and can make the disease worse.”

They were treating people who already had Alzheimer’s disease.

Too little. Too late. And wrong gene for me. Maybe.

Beau and I have ApoE3. It’s a neutral marker. May or may not get AD. But he got it.

So Dr. Baker believes (as did Beau and as do I) that there’s another DOMINANT gene entirely–not the ApoE marker—- that lends Bercaws to Alzheimer’s. Therefore, suggests DocBak, which is my new name for him, I need to start taking something NOW to thwart the plaque from accumulating in my brain.

DocBak and I are looking into trials that are under the radar right now. Other gene pools, other drugs. Perhaps Coconut Oil, which is getting thumbs up and thumbs down, depending on with whom you speak.

It’s all Greek to me, this language of Alzheimer’s. But I’m learning it.

Love,

Gal

2 Comments Add yours

  1. Allan Nicholls says:

    I, as your husband, yes…who has only portrayed a doctor in film, would be concerned about any drug in a “trial” … an unproven drug with no knowledge of side effects or non side effects and no history of its affectiveness. I think that the intake of any drug by you, should be discussed with your family, as well as DocBac, because we might all have an opinion that should be heard and considered, after all we need you, love you, and want you around.

    1. Mom says:

      Yea, Allan. I’m with you!
      I would also like to know what kind of memory problems are the concern. If it is short term memory, the rule of no wine after dinner might be the cure.
      Meanwhile a lot of us have short term memory problems and use strategies to compensate, ie lists, sticky notes, and memo calendars.
      Keep me in the loop. Love, Mom

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