Life's Tangled Web

Living with my Alzheimer’s diagnosis

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.