The Waiting Years

A friend reached out.
She told me about her mother.

October 2023: The family noticed changes. Memory issues. Movement struggles. They called the university memory clinic — the one everyone recommends.

First available appointment: September 2024.

So they found a physician’s assistant in another city. Tried there. The physician’s assistant was doing their best. The answers didn’t fit what the family was seeing.

By the time they finally reached the specialist and got a DaTscan ordered, it was August 2025.

How hard is it to get imaging?

MRI: Easy.
DaTscan: Not easy.

Real-world barriers:
• Insurance approval: weeks to months
• Limited centers
• 6–12 month wait times
• Some neurologists wait until symptoms are “obvious enough”

Meanwhile, families wait.

Nearly two years from first noticing changes to getting the right diagnosis.

Not because they didn’t care.
Not because they didn’t try.
Because the system isn’t built for the early stage.

In those two years, they navigated alone:

• Is this normal aging?

• Should we push for different tests?

• Which supplements matter?

• When do we get a walker? A shower chair?

• How do we find the right support?

• Where do we find support?

My friend is a researcher. She did everything right. She dug through forums, found Zoom groups, paid thousands for a “personalized” program that delivered generic guidance.

She told me:

“I would have paid anything to not wait. Not for a cure — just for someone who knew what to ask for and when.”

That gap — between noticing something is wrong and getting meaningful support — is where families lose time.

Cognitive Stewardship™ can help.

Not to replace your medical team.
Not to diagnose alone.

To guide families through the waiting — the uncertainty, the decisions, the system navigation.

To make sure that when they finally reach the specialist, they haven’t lost two years.

If you’ve lived this — the waiting, the confusion, the “I wish someone had told us” — what did you need most?

I’m building this for the families who shouldn’t have to navigate alone.

Please share your story. Your experiences are shaping this work.

The views expressed here are my own and do not represent those of the NIH or the U.S. government.