Risky Business

Alzheimer’s Disease is just drenched in stigma. It’s the leprosy of our time, the worst possible thing that could happen. Your hands will fall off, your nose, parts of you will drop to the ground, strewn about the landscape, and people will run away when they see you coming. No, they won’t even look at you, won’t see you because you’ll be living on an island that spares them the trouble.

Yes. Alzheimer’s has that kind of stigma. Mega-stigma.

It has so much stigma that, after each sentence, I want to say “I don’t have Alzheimer’s.” I don’t want anyone thinking my every lost key or forgotten name is a symptom in search of a disease. I’m as sharp as they make ’em, don’t you know.

Today, I got an email from a national Alzheimer’s prevention registry. This is something that I signed up for in one of my over-zealous moments about how I should do more about Alzheimer’s Disease because it killed my mother.

Participation in the registry begins with submitting a DNA test. This is so, down the road, the registry can match a person with a study or drug trial that, for instance, compares outcomes for people predisposed to Alzheimer’s to those not so unfortunate.

It’s all about the APOE4 gene. If you have it, your chances of developing Alzheimer’s Disease later in life are way higher than people who have APOE2 or APOE3. Way higher. I’d say radioactive but that would sound hysterical and that’s uncalled for this early in the game.

So I don’t know if I have the APOE4 gene but the registry folks do. I gave them my DNA, remember? And they’ll tell me if I decide to participate in the study described in the email. Wait, let me clarify. They’ll tell me if I have the high risk gene if I want them to.

I’m thinking about it.

Truth or Dare

The little box with the DNA swab for my Alzheimer’s bad gene test came in the mail yesterday. The nice people at the Alzheimer’s Prevention Registry that coordinates research on Alzheimer’s sent it to me. The deal is they don’t tell me if I have the bad gene unless I volunteer for research in which having a bad gene is germane. So I could know at some point if I have a hugely increased risk of Alzheimer’s. If I want to know, that is.

Signing up seemed like a community-minded thing to do, a way to contribute to the knowledge base. I am real keen on a big knowledge base.

My mother and sister-in-law died of Alzheimer’s Disease. How it works, how it all goes down, as we used to say, I know about that. And there’s nothing about having Alzheimer’s Disease that is noble or triumphant. It’s loss, loss, loss. Alzheimer’s left my mother limp in the bathtub with my father unable to lift her. He had to call the fire department to rescue his own wife from the bathtub. She’d lost the know-how, forgotten how to move her own body. And he’d lost his strength. Loss. Losing.

So naturally I have a fair amount of dread about the possibility of having Alzheimer’s Disease myself.

I told my husband about the testing kit while we were driving to the grocery store, including the part where I could possibly learn if I have the awful APOE-e4 gene. Having this gene increases risk but it’s not an absolute predictor. You could have the gene and be fine forever. Or not. It’s the ‘or not’ that spurs all the weeping.

“What would you do differently if you found out you had the bad gene?”

I didn’t have an answer.

Hit the road? Visit all the world’s great truck stops? Write all day every day until I become wordless? Walk the beach? Pace the hallway? Bind myself up? Let myself go? Leave a note? Or not?

I don’t know.

I’m not sure my mother knew she had Alzheimer’s Disease. I don’t think my father ever told her. He just carefully shrank her life. When it was time to renew her driver’s license, he convinced her she would have to retake the written driver’s test. He got a copy of the manual and sat down with her every night to review the rules of the road and memorize all the signs. Stop, Yield, Train Crossing. She soon lost interest, as he knew she would, and the notion of a driver’s license evaporated. He never had to say no to her, never had to tell her why. She didn’t care.

She never saw it coming. Maybe that was wise. I don’t know.

Maybe my mother, unaware and uninformed as she was, had the right idea.

She just lived her life until it wasn’t there anymore.