Real Life Cognitive Dysfunction

Updated: Mar 23

As part of my “Covid and Cognition” posts I am so grateful to another Kerry, who I have been chatting to for a while here at RoseCottageDoc.

Recently I asked her to write me a blog about her Long Covid journey and the debilitating neurological and cognitive symptoms she is still suffering from 14 months later.

Such are her difficulties it has taken her 3 weeks to write using her notes she has made from the beginning of her illness. She started writing these as she just “knew within the first weeks things were going to be very strange!”

Kerry verbally dictates into her I phone so she lessens time spent looking at her screen. She also uses her phone to speak highlighted text back to her. She edits in small sections and her husband helps with this.

Her story has been shared with those who planned regional Long Covid Clinics and a professor of cognitive linguistics. It is utterly amazing for many reasons but for me it's how much her story rings true and how resilient she has been at not letting this defeat her.

Thank you so much Kerry!

" Hi I’m Kerry. I’m 44, Pre Covid I was as fit as a fiddle, ran 3 times a week, I’m a nurse, a mum of two, active and healthy.

I started displaying Covid symptoms last March 2020, not the ‘typical’ symptoms at first the cough and temperature arrived many days later- thankfully I had an respectful and accepting GP, and an extremely supportive and understanding Occupational Health Consultant. I was clinically diagnosed with Long Covid last year.

This is a snippet of my debilitating journey, just a fragment of my 14 months living with Long Covid."

"The acute Covid illness was mild, two weeks! I started with a rash, severe headache, brain fog, fatigue, the temperature and cough developed later. I got over the acute infection and I returned to Work for about 3 weeks! Around week six I came crashing down and hit with every symptom you can think of, pain in joints, diarrhoea, chest pain, shortness of breath, cough, brain fog, fatigue, rashes, temperatures, headaches, neuropathic pains, strange sensations in the left side of my head, And arms, low oxygen saturations, heat intolerance, tachycardia, bruising, muscle twitching, loss of taste, tinnitus, cognitive difficulties....... honestly the list goes on!

The most alarming symptom for me that developed was difficulty with my speech... I started to muddle words, merge words, use wrong words in a sentence this would happen throughout the day! I literally couldn’t speak properly. I rang Occupational Health for help and they advised me to ring 111, I attended A & E as advised by 111.

I had a CT scan and then was discharged.

A couple of days later I got a call from A & E and was advised to go back down for an MRI!

The scans were Okay in terms of my presenting symptoms although a Chiari malformation was found, but I was told that this was not causing my symptoms and most likely congenital.

I was referred to neurology.

At this point I couldn’t string a sentence together, this went on for about 5 months all day some days, but some days weren’t too bad, other days I couldn’t even say my husbands name or speak a sentence correctly.

Examples :

Nonsense words, Made up words, getting stuck on words and keep on saying them, slurred muddled words, mixing words, merging, wrong words,- saying ‘Up’ if I meant ‘down’ saying ‘ yes’ if I meant ‘ no’

Blending and merging words together like ‘Royal Mail’ turned into ‘Rail’

‘Picnic’ turned into ‘packNic’ ‘

Spanish and physics’ came out ‘spinach’

‘Bloody Bag’ was ‘Blag’

‘Avocado’ came out ‘Agavado’

‘Spoon and Stirring’ devastatingly

became “Sperming” (that one made the kids smile )

Day in, day out, better days, worse days, on and off, some good moments and some bad, but on a whole just nonsense language, embarrassingly so!

I could set off ok sometimes, then very quickly go down hill within minutes.

I could feel these episodes come on, I could feel it in the left side of my head, a sensation that was hard to explain, I would go vacant, like the brain messages had stopped, nothing there, I wasn’t there! like the wiring had become disconnected, it went on and on, extremely distressing almost like I’d had a brain injury/ concussion or a stroke!

Over the following months I had phone consultations with three neurologist) Down the phone!!!!! can you imagine- I couldn’t speak properly ) one neurologist was private as, I was told by the first it was probable anxiety or Primary Progressive Aphasia ( I’d never suffered Anxiety or Depression ever )

I saw one Neurologist at 6 months, another MRI was requested.

I never had a EEG or a more detailed SPECT Scan as I was told I’m not getting worse, and my symptoms were fluctuating in nature, good days and bad days.

I referred myself to speech therapy for advice.

I felt I was battling this alone, no one listening, no one could help , no one believing Covid could do this... Dismissed by many, I felt ALONE!!!

I was confused, not functioning, continuing with all the above symptoms- temperatures, pain, rashes, heat intolerance, headaches, cough, fatigue, brain fog, Neck pain etc etc... Sensory overload felt mind blowing, I was baffled at simple tasks- like hanging out the washing, crossing the road, even plugging my phone on charge-if something else was already plugged in, it was brain battering, I would stand there confused!

I couldn’t speak properly, function properly, I couldn’t read, I became dyslexic I was blending words like a child , My memory was bad, I was repeating myself all the time, and all of the strange bizarre symptoms continued!

After about 5 months of symptoms I had a consultation with The speech therapist who told me to “Rest Rest Rest” this was the first person who had told me to do this, complete rest- cognitive, physical and emotional, I thought rest was sitting down watching TV.

I started to pick up extremely slowly, like you couldn’t see an improvement over a week, but there was tiny improvements after months.

I went from not being able to manage a sentence at times, to managing longer conversations, this was ridiculously slow, over a period of months!

I have had input from the Covid Occupational therapist this year, they did a cognitive assessment which was showing difficulties with fluency and memory, she has been a great help in regards to Pacing and Resting. It was also suggested I try a brain injury training app, I’ve been doing this app for about 5 months And I can definitely see improvements with memory, mental agility and very slow progress with language.

In January I was Grateful to take part in some research with a Professor of Clinical Linguistics.

The research was Cognitive- Linguistic difficulties in Long Covid. I’m awaiting the full report. Memory, language disfluency, processing speed, immediate and delayed recall, executive functioning were identified as my difficulties.

Suggestions off the Health Professionals I’m under....

It’s been my Immune systems response to the virus, and the nervous system has taken a hit from the immune system, Causing the nervous system to not function properly, and Also Cognitive Fatigue

This is my Journey with long Covid, and as we know long Covid is very individual, it’s debilitating and damagingly different for everyone.

One size doesn’t fit all! And what has helped me may not help others!

We are all different, and some people are sadly far worse than me!

What I’ve learnt along the way and what has helped me:

I feel Rest and Pacing has helped me:

By rest I mean -complete rest, no phone, no screen time, No TV, no talking - just meditation or sleep.

Switching tasks helps me, so a bit of cognitive, then a bit of physical. The change of task helps me restore that part of my body.

Digestion takes my energy, Menstruation takes my energy and flares up my symptoms, so extra rest is needed just to accommodate these internal activities, if I don’t, then I can’t speak properly.

I still become fatigued and lose my ability to speak properly if I have had too much screen time, long conversations, if I’m trying to process too much too quickly, sensory overload, Digestion, and if I over do the physical. Its all evident as my speech/language becomes slurred, slow and muddled, and you can see I become drained and drowsy...It feel like I’ve been hit over the head, or I’ve just drank a bottle of vodka!

It’s only really over the last few months that I can identify where surges of energy go and what uses more for me.

Last year I was too flatten to identify any energy output because there was nothing there... I was ground Zero!

The brain injury app has also supported me, just five minutes a day, and Ive been able to see my progress over the months, that’s encouraging because this illness is relentless... Note...last year would not have been the right time for this App, there’s no way I could have achieved any of it.

I’ve learnt not to fight it, I have to go with it, it’s like stepping back from an argument that I won’t win! (And I’m a person who likes to battle on)

Stop, Rest, Pace-Cognitive, physical, and emotional energy. Even on the good days!

I have had to Listen to my body- mine was saying STOP!!! Then it stopped anyway!

I needed to rest and reduce the invisible Energy-thinking, talking and sensory input!

Last year I couldn’t remember things, At times I couldn’t process a conversation, I couldn’t function, speak, or read for any length of time

I was experiencing the symptoms above every day for nearly 12 months, on and off, good days, bad days, relapses!!! ...I get better than it all starts again, and back to square one!

14 month on..., I can now manage a short conversations, more screen time... I can read, I am no longer confused at simple tasks, my memory is improving. I can go for walks. I have less temperatures, rashes, brain fog, sore glands, and all of the other hideous symptoms Are, I think, fading out, Or am I just managing the symptoms better!

I’m still not back to who I was, I’m still not back at work, and if I try to speed things up or Rush in anyway....I’m slapped back down.

So for now I carry on doing what I’m doing, and Each day live in hope that I’m another step closer to going back to the beginning, back to start, back to the person I was”.

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