When It’s More Than Just Forgetting: My Journey to a Diagnosis

I haven't written in some time, for several reasons.

First, it seems that even though I spent a great deal of time working on getting this blog recognized by Google as an Alzheimer's blog, it hasn't. I say that because I can see that only one or two people actually read it, and I'm pretty sure one of them is my niece.

The second reason is a little more complicated.

I'm in the process of trying to determine whether I actually have Alzheimer's.

I was diagnosed about seven years ago with a rule out of Alzheimer's, meaning that no other explanation could be found for my symptoms. That diagnosis turned my world upside down. The more I read about Alzheimer's, the more I realized that I simply couldn't put my family through what I imagined was coming.

As you may know, Robin Williams died by suicide after being diagnosed with Lewy body dementia. His family has spoken about his desire to spare them from watching the disease take away the person he had been. I understood that thinking more than I probably should have.

I didn't choose that route immediately. I figured I had some time before I had to resort to it.

But I did make another decision.

I moved away from all of my family and friends because I thought I was sparing them from what I would eventually become.

I joined some Facebook groups that were supposed to be for people with Alzheimer's and their caregivers. Instead, I found post after post from exhausted caregivers who resented what had been dumped on them. They no longer had lives of their own. They wrote about their mothers or fathers becoming abusive, even violent. They wrote about shouting obscenities at them and telling them that they hated them.

Did I want that for my family?

No.

I'd rather die alone in my house and have the cat eat my toes before anyone finds me first.

Yes, that is an actual thought I've had.

So now, after insisting from the first time I saw him three or four years ago that I didn't have Alzheimer's, my endocrinologist has finally gotten me to reconsider.

I discounted what he was saying because my original neuropsychologist had told me that nobody would even believe I had Alzheimer's for many years because my verbal skills had not been affected.

But my endocrinologist kept insisting.

And then I realized something that I couldn't ignore:

My symptoms haven't gotten worse.

So I asked my primary care doctor to order an MRI to see if I might have had a silent stroke, as my endocrinologist thought was probably the case.

Nope.

Now I have an appointment with a new neuropsychologist later this month.

And I'm left with one enormous question:

What if I don't have Alzheimer's?

What if I threw away my life for nothing?

What if I moved away from the people I love, changed the course of my life, and spent seven years preparing for something that was never going to happen?

And what would I even call this blog?

The Adventures of Someone Without Alzheimer's?

I'm stressed.

I'll let you know.

On a lighter note...

I've renewed my love for dolls, and now I'm getting into sewing for them. This is an ICY Blythe doll wearing an embroidered dress that I made for her.

The seam ripper and I have become very good friends.

ICY Blythe Doll 1/6 BJD Wearing a handmade dress with embroidery