Thread by @__Granuaile__

This week, I went for 2nd neuro psyche eval at stroke clinic to dx extent of cognitive decline due to strokes & brain damage post Covid.

Drs notes just added to my chart -

"Major neurocognitive disorder with severe impairments."

Dementia.

#LongCovid
#LongCovidAwareness
1/9

I'm shook.

I'm 45 years old & have just been dx with dementia.

Idk what I was hoping for, maybe that they would tell me things weren't as bad as I thought.

I guess I had actually hoped for a little dismissal for a change.
2/9

I won't meet with the doc for another month to discuss these results & hear her recommendations.

Why TF do they schedule follow up appointments to go over results like this so far away from testing?

This some bullshit.
3/9

It's been 27 months since my 1st stroke & I've already declined so much. I've already lost so many memories & struggled to hold on to who I was before.

Now I'm absolutely crushed.

I'd been told the brain damage was progressive. I guess that hadn't really sunk in proper.
4/9

I have progressive encephalomalacia of r parietal lobe, damage to frontal lobe, basal ganglia, lesions throughout brain & brain stem, a mass on my pineal gland, volume loss & 4 inoperable brain aneurysms.

It's like covid got in my brain & just attacked everything in sight.
5/9

I've fought so hard to rehabilitate physically from the strokes & accept damage that can't be healed from no matter how hard I push myself.

I'm still working on that.

This cognitive stuff though is a whole other thing, ya know?
6/9

Seeing rapid degeneration of my brain tissue & super rapid cognitive decline just over course of past 3 years has me really scared y'all.

Like, super scared & unsure of how to prepare myself to accept I'm gonna slowly loose myself piece by piece until nothings left.
7/9

How does one set themselves up to accept that fate?

I'm not ready to give up but I'll be damned if that isn't defeating AF.

As if my anxiety & depression weren't bad enough before.

8/9

Please send cat pictures.

Or pics of nature.

Or a majestic sunrise.

Or pretty much anything that elicits a spark of joy somewhere in your heart.

I need to see some happy right now.

9/9

TY all for kind words & photo shares ❤️
It has really helped lift my spirits last night & this morning.

I am so grateful for each & every one of you sharing your joy with me.

For those saying u hope I get better & recover missed the point of my post a bit.

I'm navigating living with terminal dx due to 4 inoperable brain aneurysms that are growing & surrounded by clots threatening to rupture or cause another stroke at any time. If they rupture, surgery may not save me & I will likely die.
There's also a mass growing in my brain.

Though I have received a terminal dx, I've continued fighting to recover from the strokes & hold out hope.

Unfortunately, the brain damage is permanent & worsening & won't get better.

This post was about that acceptance & grief.

Bc there are clots surrounding the aneurysms that could travel at any time, I could also have another stroke at any moment causing more brain damage & further disabling me.

I live w the constant threat of death every moment of every day.

It's ALOT to fully admit that I won't "get better" & have a diagnosis that I'm in rapid decline.

It's ALOT to know I could hv another stroke or die at any moment if aneurysms rupture.

I'm working thru lots of things & it helps to share & I know sharing could help others too.

I'm far from ok right now & that's ok too. I'm sad, angry & feeling pretty defeated with this new dx atop everything else.

I've been fighting so hard for so long just to survive, I really had hoped for good news for a change.

I hate being a canary.

This is the reality of
-3+ yrs of Long Covid
-multiple reinfections
-cardiac conditions brought on by covid going untreated
-brain damage caused by covid
-strokes after covid
-dismissal by medical providers

My story is not unique, so many others are suffering significant cognitive decline & are receiving similar diagnoses.

We have been trying to speak up & warn the world about this only to have it dismissed as "brain fog" & belittled at every turn.

My brain scans show volume loss & softening of brain tissue which is not reversible. This is permanent. This is progressive. Covid is eating away at my brain tissue.

Scans have shown this progression over the past 2 yrs!
Why do you think I've been so loud?

I'm sharing my journey through this hellscape to try to protect others from it.

I beg you, continue to fight for protections for yourself & others.

Pls help advocate for those like myself who are no longer able to speak up as loudly anymore.

The canaries are tired.