Thread by @WesElyMD

1/🧵 Real-World Long COVID
 
🔹She got COVID Oct 2020
🔹59 y/o walked 5mi 4x /wk
w no prior cognitive problems
 
🔹“I got better but 4 mo later my memory faded. I struggled.
🔹HR came after me, ‘You can’t do your job.’”
 
Husband: “I want my wife back!”

(Pics & story w perm)

2/ Could her new #dementia be unrelated to COVID?

Maybe, but…
 
Her excellent neurologist feels her negative work-up, young age, speed of demise, temporal onset in relation to COVID all fit LongCOVID-related brain dysfunction & not a pattern of Alzheimers.
 
They want to share

3/ Husband through tears: “I want my wife back.”
 
Her Description – “I walk down the hall & see pictures of family & trips. I feel like a ghost because I don’t remember. My husband cries because I seem gone to him.”
 
“I’m trying to figure out who Barbara 2.0 is going to be.”

4/ “HR officials said there’s no position I can take & I was forced out.”
 
“I’m diagnosed w rapid onset #DEMENTIA & ongoing lung scarring from COVID. My medical work-up is negative other than COVID. I got this before the vaccine was available.”

https://twitter.com/erictopol/status/1613965639609372673

5/ “I thought I was on my own until I went to the Long COVID Clinic & got speech therapy to work on cognition.
 
I told my story in support group and started crying because I was excited I wasn’t alone anymore. It’s community that’s saving me.

https://twitter.com/jcjackson68/status/1613727167589883905

6/ “Cognitive and speech therapy brain exercises (word find, bananagrams, puzzles and COGFIT 2 hours per day) were helping me but I ran out of insurance to pay for visits & started regressing backwards.”

cnb.cx/3Wh6Cu5

7/ Husband: “Doctor letters and appeals haven’t worked with insurance but we’re still trying. Insurance doesn’t recognize #LongCOVID as a long-term disability, which is wrong.”

bit.ly/3ZTam8f

8/ “In my 🐝 Brain Game, I’m supposed to click on green leaves but I forget & click orange & blue & kill my bee
✔️ My memory is atrocious
✔️ In life, I want to be a productive person and help others. I won’t give up.”

Here she is Pre-Covid doing daily exercise.

9/ Misinformation 😨

“My sisters don’t believe in #LongCOVID & say it doesn’t exist.

Why?
 
Mom died & I missed saying bye to her. I wasn’t able go to my mom’s funeral. It’s extremely hard & makes me feel totally lost.

And my sister disbelieve me⁉️

nyti.ms/3WbcMf3

10/fin
“I’m a ghost to myself & my family.”

“Being in @CIBScenter support group saved me. I wouldn’t have made it without them to talk to & care for each me.

Our text stream has us saved lives from suicide.”
 
#FindYourTribe #Community #longCOVID #Recovery ❤️‍🩹