Life's Tan­gled Web

Liv­ing with my Alzheimer’s di­ag­no­sis

Santa Fe New Mexican - Healthy Living - - CONTENTS -

You’ve prob­a­bly been won­der­ing where I’ve been. Well, I have too. So when the neu­rol­o­gist told me I had tested pos­i­tive for Alzheimer’s dis­ease, the first thing that popped into my mind and out of my mouth was, “Will I lose my sense of hu­mor?”

He shook his head no and added, that’s a strange ques­tion. “Usu­ally, peo­ple want to know: How much time do I have be­fore I can’t re­mem­ber what word fol­lows an­other word.”

Although, through the years, I’ve met some folks who al­ready think like that.

So how long do I have be­fore I can’t re­mem­ber nada? I started blurt­ing out ques­tions:

“No one in my fam­ily has Alzheimer’s. So how did I get it?” “What is it?” “How long have I had it?” “Is it catch­ing? I mean, I don’t want to give it to some­one else.” “Was there some­thing in my diet that caused this?” I didn’t know what the doc­tor was think­ing, but the word “kale” was rolling around in my brain. I hate kale.

I also hate the thought that with Alzheimer’s, one part of the brain doesn’t ex­actly con­nect with an­other part, so when I left the doc­tor’s of­fice af­ter he gave me the di­ag­no­sis, I pulled over to the side of the road and cried. And cried. And cried.

Be­cause, my friends, the deal is, there is no deal. That’s right, no cure for Alzheimer’s dis­ease. No magic pill. Noth­ing. They don’t even know what causes it, although the term “beta-amy­loid pro­tein” is used a lot. So is the word “tau,” which is so com­pli­cated, I can’t even be­gin to ex­plain it.

Now be­fore we go any fur­ther, if we go any fur­ther at all, I have an im­por­tant con­fes­sion: I took Bi­ol­ogy I five times in col­lege. And be­lieve me, it wasn’t be­cause I liked the sub­ject.

So why am I writ­ing all of this? I want to tell you not to be afraid. There is noth­ing you or I can do, so we might as well en­joy the time we have left be­fore our brain tan­gles get even more tan­gled.

Here’s an­other con­fes­sion: I have curly hair. So does this mean I have more brain tan­gles than the av­er­age per­son?

I asked a doc­tor. I’m not the most pa­tient per­son, but I waited for an an­swer — af­ter all, this is im­por­tant, and there are so many med­i­cal ques­tions and an­swers.

In what seemed like a few sec­onds, the man was back on the phone with me. “Now let me get this straight,” he said care­fully and slowly. “You want to know if you have more brain tan­gles be­cause you have curly hair?” He re­peated what sounded like an OK ques­tion to me. But I heard him take a deep breath and ask, “Who are you?”

Well, if I knew the an­swer to that, I wouldn’t have to ask these ques­tions, now would I?

So where do we go from here? I have no idea. No one does. Am I fright­ened? Hell yes. And if I keep think­ing about this, I’ll have to pull over to the side of the road again.

Re­mem­ber, there’s noth­ing we can do. Na­ture will take its course. The only thing for us is to have the best time of our lives and con­tinue to be nice to one an­other. Be­cause, as my dear friend Tere­sita San­doval used to tell me, “Eeeee, Denise, you never know.”

And that’s all she wrote. Denise Kusel is the for­mer editor of “Pasatiempo” mag­a­zine and the author of the award-win­ning hu­mor col­umn “Only in Santa Fe.” She cur­rently is work­ing on a book about “what you want to be when you grow up” and teach­ing se­niors how to stay out of trou­ble — or at least not get caught.

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