Long Covid Brain Fog is not Fog: It's Brain Damage
At my fifth "home" this year as a vagabond moving around as we rented out our home to cover some finances due to Long Covid, I was having my morning coffee with my wife and brother-in-law. Marc started to ask me something. Google Show was playing the morning news before I was to head out for my IVIG infusions and I told Google to politely shut up. Sorry, I exclaimed to him, " I have OCD and ACD." My wife quickly asked, "don't you mean ADD?"
I quickly retorted, "no I mean ACD." She then asked, "What does that stand for?" Like my late father who succumbed to Dementia this year, I find myself sometimes "making up answers" or explanations to my gaffes. "It's Attention Chronic Deficit," I explained. (Patent Pending.) We all laughed at the exchange--sometimes you have to laugh instead of cry--it's good medicine.
This is a tough post to write in more ways than one. As someone with Long Covid (famously coined Post Acute Sequalae Covid or PASC by "Saint Fauci,") one of the many symptoms has been labeled as "brain fog." I'll get into the "hard to write" part later, but first let's talk about that term I hate which is Long Covid "brain fog" or ACD.
Another thing I consistently point out (as relayed from world experts) is that we are still very much in the "research phase" of Long Covid. Having said that, there are recent studies that would indicate that "Timmy's little brain boo-boo" is not something to be taken lightly.
Just as there's a cascade of symptoms, there have been a cascade of medical studies on the impact on the brain. This morning, Carlos McCone (great Twitter follow for #pwLC) posted a WebMD article that stated, "People who got COVID-19 were twice as likely to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID."
Great...the gift that keeps on giving.
From the Medical Journal of Australia they state, "more proof COVID is a multi-system cluster bomb"--"bomb" sounds a bit more serious than fog to me. The most consistent description I get on Long Covid is that is a post-viral condition that attacks multiple systems in the body so "multi-system is right."
Phd candidate Stacey Rowe (and her MJA colleagues) go on to say;
“You are 15 times more likely to acquire myocarditis requiring hospitalizations following COVID-19 compared with beforehand."
“The incidence of hospitalisation with cerebral infarction was twice as high after COVID-19 onset as during the baseline period..Other investigators...have estimated the risk of stroke to be 2–13 times as high for people with COVID-19.”
Clinical epidemiologist Ziyad Al-Aly, MD, clinical at Washington University shared findings published Sept. 22 in Nature Medicine; "The results show the devastating long-term effects of COVID-19. These are part and parcel of long COVID. The virus is not always as benign as some people think it is...Memory problems — colloquially called brain fog — are one of the most common brain-related, long-COVID symptoms. Compared with those in the control groups, people who contracted the virus were at a 77% increased risk of developing memory problems."
One of my (future blog post? #longcovid superstars,) Dr. Wes Ely of Vanderbilt has an excellent series of TikTok videos (sorry...one social channel I haven't globbed onto,) and recently talked about how micro clots (essentially) cause brain fog (there's that term I hate again.) (Video post HERE.) One of my biomarker panels from RTHM (out of California) indicates I have vascular inflammation (sCD40L nearly 4x higher than it should be and VEGF over 4x.) Can you say "Maxi" micro clots?
But again "the jury is still out" on diagnosis and treatment as Dr. Ely shares in his video, "Why not just give them blood thinners? How to treat this is still up for grabs. We're trying..large controlled trials...talk to your doctor." Three other "gold standards to follow the micro clot topic are Professor Doug Kell, Professor Resia Pretorius, and Dr. Elisa Perego. Professor Pretorius recently visited with David Putrino from Putrino labs and discussed this topic (and I'm hoping) how to transform research-centric testing to be more ubiquitous. You can't exactly stroll down to LabCorp and request the "Fluorescence microscopy" micro clot testing.
If you're wondering how it may present itself; with me, I can best explain with a variety of examples--many I've chronicled here or I put in my phone to try and remember later.
Some symptoms present themself physically. My equilibrium is off using rails more often, sitting in the shower, and falling a few times--the later resulting in a broken bone in my foot and a couple contusions.
Dating back to my Today Show interview in 2021, I talked about picking out dinner to be picked up for the night. I recommended the restaurant (I can't remember the name as I type,) we ordered and I agreed to pick it up. Ten minutes away from the house, I pulled over to look at my Google search to remember the name and location of where I was going.
My wife has learned to recognize there are awkward pauses to questions she asks--sometimes out of habit (as she has spent twenty years with my "old self",) she quickly restates or asks the question again. I often abruptly snap, "I'm thinking!" Not something I'm proud of.
Just as my symptoms have "morphed" over the months, weeks, and sometimes within a day, my cognition issues have seemingly got worse. The latest is word jumbling; almost drunk I asked my wife to "chest the chicken (meaning check.) I will also lose words to things I should know. Similar meal exchange, I pointed to my wife's sandwich and asked, "how is your_____?" Drawing a blank she completed the sentence with "prosuitto." Of course I can't pronounce the word either.
My mental gaffes and gaps mirror Professor Louise Cummings recent Long Covid Survey including "I struggle to find words, I forget what I wanted to say, and mix words up." Go HERE to take the survey yourself if you have Long Covid and feel you are struggling with "Brain Fog."
My social activities are curtailed significantly but did decide to attend one of my closest friend's daughter's wedding this last summer. I figured, I could rest all day, sit through a short ceremony, have dinner and skip out on all the dancing and late night drinking. Alcohol and Long Covid don't mix.
The month before was the bridal shower. I picked up my wife and told my very good friend that I "didn't recognize your son" as he'd grown a beard and was wearing a hat. It was his brother. I knew this but jumbled the exchange.
The night before the wedding I ran into the father of the bride's sister-in-law. At the wedding the next day, I told her "I'm sorry we didn't get a chance to chat last night." She looked at me very confused, and said, "we talked last night." I brushed it off just as my dad often did when explaining lapses in memory due to his dementia.
On my disability journey, I had to go in for what I thought was a psychology interview--I freaked out thinking this sure smells like the gas from "gaslighting." The first 30-45 minutes was a function interview--can I bathe, what can I do around the house, and I said that mental activities that are intense (like my former job) I can only handle about 90 minutes worth before a symptom tsunami. I'd then have to take a nap that afternoon and likely call in sick the next day--in other words, "super employable."
What came next was a cognition test--in all it took about four hours. Think Trump and "person, woman, man, camera, TV." Both were pure torture.
I consulted my notes I'd sent off to my disability legal team on what I recalled from the session. Looking back, most of my notes were around my function, but the bulk of the four hours of "Helga's House of Pain" was the (Pearson?) cognitive test. Some shape puzzles, recalling details of a story, and as we neared the end, word combinations.
For some reason, the one I seemed to recall the most that day was woman/zoo. Perhaps because it was such a nonsensical combination of words. Other word combinations, I could tell I was guessing most of the time and guessing wrong. I also talking about reading and the fact that I've given up on novel/pleasure reading as I would have to read and re-read pages several times without recollection. I can't remember the name of the book I last tried to read.
I'd add that many of the articles and studies I've mentioned above, I have to either skim, certainly re-read, or jump to the conclusion section as Long Covid is a complex topic.
Brain Fog has been labeled (but couldn't find the reference) as "rapid dementia." In my case, I've seen a decline from '20 to '21 to '22. It's especially hard to hear that as my dad (preceded by the death of my mother this year) died from Dementia after a bout with (ironically) Covid-19. I'm not saying my dad died of Covid-19 and as harsh as it sounds, his Dementia had advanced to the point where he didn't have much quality of life. I miss them both as they worried about me until they died.
Now getting to the "hard part" of trying to put thoughts on (virtual) paper. As my cognitive issues seem worst at the 34 month mark. It's humbling and damning to one's self worth to admit you have issues with your brain. It's also hard to write as "the internet is forever." My wife (God bless her) reminds me of this often and I used to hammer that into my kids as they were growing up.
I still have hopes of returning to some semblance of my former self. The "brain fog" is one of those symptoms that I fear would prevent me from returning to any meaningful employment--that also assumes other disabling symptoms also go away. I "drift" into that fantasy future and imagine the hiring manager or HR manager Googling, "Ty Godwin." The results would yield my very public journey; my LinkedIn profile, Instagram, twitter, this blog, Facebook, and Today Show Interview back in 2021.
My "previous life" was in the telecommunications and software industry as a software sales executive. I sold complex solutions including analytics and cloud compute. This was a former art major in college so much of what I sold, I had to learn--with lots of reading. I'd built an amazing career but haven't worked in almost two years--I tried to work through illness for much of 2020 before going on disability and becoming unemployed.
Back to that nirvana of returning to my former self and going back to work, my manifesto doesn't exactly make me a desired employee so that's the final reason that this post is hard.
Trying to wrap this winding foggy journey post up, why would I share this? One is for awareness and advocacy. Many believe that Covid isn't real or no more dangerous than the flu. This is potentially a deadly misconception. Secondly is writing about this for me is therapy. Third related to the first is that I hope that awareness and my advocacy can lead to change.
There was a sliver of good news in terms of research in the USA (which lags the world on research) with Patient Led Research announcing this month, "The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions." This is a great start as the NIH has bumbled (IMHO) the $B in funding notably passing on the micro clot research request from Putrino Labs.
Aside from research I go into greater detail on what changes need to happen in my recent blog as our Government seems to have "moved on" and is ignoring the Long Covid "tsunami" that's followed Covid-19. Thanks for reading, and keep advocating.
Is it Long COVID, or Dementia, or Both? WebMD
More proof COVID is a multi-system cluster bomb: Insight + Powered by AMPCo:
Professor Kell Bioanalytical Sciences Group Publications: (with Multiple contributions from Resia Pretorius)
COVID-19 infections increase risk of long-term brain problems
Washington University School of Medicine in St. Louis, Kristina Sauerwein, Ziyad Al-Aly, MD, Clinical epidemiologist at Washington University
Dr. Wes Ely Tiktok (Long Covid Videos and Bio)
Man sick with COVID-19 for 14 months details struggle with brain fog and more: Meet Ty Godwin, a man who has experienced ongoing COVID-19 symptoms for over a year.
Tom Costello, NBC News Correspondent, Chrissy Callahan, Journalist Today Show
Long COVID: The impact on language and communication: Professor Louise Cummings, Hong Kong Polytechnic University