Very Young Onset – No Answers Yet, Just Holding On

Hi everyone,
My name is Cole, I’m 36, and my husband is 37 (turning 38 in July). I’m Autistic, and I’m very good at recognizing patterns — which is how I started putting pieces together that something was very wrong. Looking back, my brain started tracking the weirdness 2–3 years ago, but honestly, most of our marriage has been peppered with things that most couples don’t go through. It’s been rough. Isolating.

In February, he had a severe memory lapse that screamed dementia to me. I couldn’t think of anything else that would cause such a severe slip. I don’t know how many of us are out here dealing with very young onset — like, really young onset — but I feel like I’m breaking through a ceiling. Shortly after joining some forums, I read about a woman who passed at 33, and that is the closest I've come to someone my age dealing with this.. I've talked to someone 10 years older too.

Since that event, I’ve been documenting every oddity I can — and combing through our history for things that make more sense in retrospect. I brought it to his PCP, who brushed it off, suggested couple’s counseling (because of the personality shifts), and flat-out said “It’s not going to be dementia.” 🙄

Eventually we got into psychiatry. He was given the SLUMS test and scored a 20 — which for his age is deep in the dementia range. They sent him for an MRI. It came back showing microangiopathy and diffuse volume loss. That was March 29. Since then? Crickets.

We did get accepted by neurology at a nearby research hospital — but the soonest appointment is January. Yep, 9 months from the MRI. No treatment, no diagnosis, no real direction. Just “wait.”

My husband is a nerd and wanted a 3D print of his brain (gotta love him), so he asked for a CD of his MRI images. I’ve been going through them myself. Some of the slices seem tilted or uneven, which makes it hard to confirm what I’m seeing, but I think I’m seeing signs of both vascular damage and possibly Alzheimer's patterns. I’m no expert… but the problem is, I’m also not being given access to an expert.

So here I am. No diagnosis, no roadmap, but full responsibility. I’ve had to take over all finances, all driving (I told him I don’t think it’s safe for him anymore — before a formal diagnosis, which was a heartbreaking call to make). We have a 10-year-old son, and the weight of it all is just… enormous.

I called the Alzheimer's helpline last night and they gave me some resources (which I appreciate), but mostly emphasized how rare this is — yeah. I know. And here we are anyway.

My next flicker of hope is May 29, when we see a new PCP who says she has experience with geriatrics and a love of “difficult cases.” I’m cautiously hopeful that something finally clicks into place then.

Thanks for reading. I’d love to hear from anyone else navigating this absurdly early path. It’s lonely, and it’s terrifying.

— Cole