Worrying cognitive decline / impairment drug induced reversible?

Belgiangirl

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It appears we simply signed up for one of the toughest things ever. Like one could be surfing a modest wave, or erratic wave patterns, but in our case, we got towed out to that GIANT Wall of OVERHWHELMING engulfment.

The only way I make it thru this is to more or less consider today, as about it. Thinking about all the possible future scenarios is just entirely beyond my capacity currently. Nothing here is the Plan. Never did I imagine being this incapacitated and mentally fragile. Emotionally intensified. Physically wiped out.

Pondering past events- is something I certainly can still do fortunately. However, I now find that when I ponder "recent" past events, is all tainted by the worsening of this illness. So I then recall that only six months ago, I somehow managed to go walk 6 blocks, now its 150 feet and regretable. 2 years ago I read a library book. Now, I don't read more than about three paragraphs.

My brother (whom I hardly see, because I can't go off and visit people)...sent one of those Xmas letter updates. What they did over the year, the major developments etc. I've not actually read it yet. Because he printed it in some weird font that literally, my eyes can't read it. So now will I be asking him to send this over in Times Roman? So I can actually read your Xmas message? Perplexing. I never understand how I should interface with others and this illness. So mostly, I don't see people.
I really understand how depressing and heavy the physical impairment part of our disease is. I was in it to for many many times and I never turned back to normal capacity and it is very obvious when I am among others I am the weakest one in terms of psyhical capacity.
But however if I laid in bed, for a day, a week, a month or even more years which was the case for me having difficulties with even reaching the toilet and not able to cook for myself or going to the supermarket a block away would exhaust me like crazy even if I went there with car and everything or those days I was hungry, thirsty and evertyhing but didn't know how to get food... I really do know it.

But for me if your brains just don't work anymore, your identitiy is gone, your memories gone, your ability to reason, to think clear, to overthink, to reflect, to (..... I forgot what I wanted to say...), to read, know that you will forget what you are talking about now with friends, that everything will be gone and lost and unretrieveable or not retrieveable at the right time (whilst in a conversation on the moment you want to say the word or expression or fact).
I was a walking encyclopedia, people saw me as extremely gifted, that was were my whole identitiy was built about. My job was helping people with phd's and dissertations (mainly from behind the computer because I had no physical possibility of meeting anyone and could simply not bring it up so I did work the moments in which I was able). I would write articles, books, ... analyse, scrutinise things, thinking of reserach and possible experimental designs not to miss any confounding factors, i could give speeches and lectures taht would blew people away and I could influence them and knew how to convince them because I would always back what I would say with lots and lots of evidence, all knewn by heart. Everything is gone now...
I look up in astonishment when people just say things wondering about how they could only keep that mind going and put the words out they want to tell and keep up their reasoning without losing what they wanted to say... I am impressed by anyone, people I used to look down now or I could easily argue back against if necesarry (I could defend the devil if necessary always would find an argument to see things in another perspective) because they can do something that used to be where my whole identitiy was about... I was in politics and given the fact I was gifted very wel orally and able to express myself and also scientifically educated chances were really there that I would make a carreer. (As long as this did not implicate I had to be mobile and everything or awake from morning till the evening but just could sit behind my computer and make bright texts or do research...).

I am like an empty shale ... not only physically not worth a penny, well I have been worse. But believe me I would trade it only to be able to give my life back its colour again and those memories, the ability to form memories, to reflect, to think, to reason, to analyse, to be critical, ... Now I have nothing to say anymore, it's better for me to shit up at all cause i speak nonsense or very superficial talks at best, going deeper is impossible for me, let alone philosophing about the world and possible problems like I used too.
My fountain of thoughts and endless inspiration is gone...... now i have to hope for others to save the world while I knew i was a kind of brainac and had a very high IQ exceeding even the majority of people whom I met during my universitary studies and in the academical world now, even though they got phd's and became professors. (There are people that are similar then me though but I can't make the comparision anymore exactly since this shit is going on for 3 years with me so I got dumber and dumber by the day, finding them smarter and being totally overblown by their reasoning and talking so I am clueless: I don't know anymore what I used to think of them or how I was in comparision to them before this shit happens... My memories are gone while my brain was a spunge taking everything up after reading or going to it it once... like a camera.

It is my brain. ANd there is nothing in the world, for no-one, more critical to oneself to one's brain. It makes possible ANYTHING you do or do not, on a daily basis, everything you can ever dream, think of, imagine, ... nothing is possible without a functioning brain!! Whatever your limbs or rest of your physical body says... if you lose brain health, everything your brain is about, you lose what makes you you, the very specific and unique human being... brain health is linked with all quality of life one has got. Believe me.
If I see people here talking things like "my very worst symptom is back" then I think: you ain't see nothing yet.
It is easy to complain - during the first 15 years I was ill I never even found this forum: i was to ill and i accepted my faith too and didn't think I would crack some magical healing code - and i was to busy focusing on what I could do: reflecting, thinking, analysing, being critical, ... (of course on extreme events you are also to tired to do that, but I wouuld recover and be able again, even tough I would write from my bed what I have done many many many times).
This is not a message to hurt anyone, but a message that hopes to make people aware that they shouldn't complain like their QOL or lives are hells and disasters. There could be one day, that you lose even more...
And then you got real reasons to complain... Embrace what you still have got left today! It might not be there tomorrow!
 

Belgiangirl

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Just for the books and the sake of registrating it somewhere in case someeone might be in the same scenario later -which I profoundly hope will NOT happen...
I took 1200mgs of piracetam today and combined it with 125mgs of fosfatidylcholine (splitted the capsule of 500 in half). Headache stayed away.
Tough no improvement i have been aware of during day... Quiet tired last hour (need to go to bed but still so much things to do and now I do feel a vague headache coming up.......

To be continued.... god i am going to be over the moon when I meet my neurologist again and hope he can shine a light on this and wants to go to the end of the world and back with me to make sure my brains get back....
 

panckage

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I'm sorry you are having such trouble @Belgiangirl . I have severe cognitive symptoms as well. I completely lost my personality. Life became survival and nothing more. I believe this resulted in CPTSD. Everything was just like an attack on my brain. I have had some progress but its still ongoing. One thing I might suggest is microdosing. Whenever I do this it feels like it has a cleaning effect on my brain. It becomes easier to connect ideas . I notice it becomes much easier to maintain proper health behaviors
 

Belgiangirl

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My neurologist could only confirm what I already noticed so MCI ...
No solutions, nothing...

Piracetam, citicholine and stuff do enhance depressed mood. If I stop it (I had to do so for PETscan) this down feelings go away.
So I can chose now between being cognitively messed up completely and not been able to plan, initiate things, be organised, or be depressed :-S :-S
 
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I have a referral to a neurologist..but first I'm going to get eyes examined...as the EYE BLURR is so severe (nothign happened 4 years ago when I tried to get eye doctor help, they refused to provide any). Frankly I have no idea what happens in neurology and am hoping I can figure that out eventually soon.

The cognitive decline and Loss of Identity- well that just has entirely happpened here and I can be miserable about it, OR I JUST TRY to cope and look at life now as: chapters. The chapter of my competence, my abilities to get important things done, that mattered, that made the world a better place; all the expertise gained...all the pearls of wisdom- NONE of it matters much any longer as I can't Do any of that stuff any longer.

The list of what one can't do- seems to grow over time. So the fact that both knees inflammed and now simply standing for a little while is a problem- MORE DEMAND TO GIVE UP....Don't go down the stairs a second time.

Yet for now at least, I"m managing to convince myself i won't lose the whole shebang, at least not yet. I can still pull out the Tall Tales...the Life Stories...its last week, last month, and one minute ago that are the big problems.

- I still can pull out the names of people while my husband, 8 years older, is getting worse and worse at that (he is 75; And he is still smart so its not a disaster...).

Examples of the Cognitive...

Stand up from chair, to get laptop, to ask it Why am I taking Taurine (because I forgot already, a new addition, that was last week? ) Walk to laptop. Have no idea whatsoever of why I took three steps to get it or what question I was asking.

Attempts to tell a brief tall tale- my roommate (husband)...well he is very limited Attention Units. So I try to describe some short event that actually transpired- he interupts me, makes some non-sequitar remark...and walks off. I now have NO CLUE what I was just about to tell him. 10 minutes later, I only recall I'm pissed, and I'm alone still. Even the people nearby, aren't PRESENT.

Interrupting people- in recent years, I did that alot because otherwise I"d forget my question....write that down and ask it later- I was never good at that. People don;t understand your rushing toward this fleeting vapor thats rapidly evaporating called- THAT THOUGHT. And its like one is almost desperate, not to lose it.

A lifetime accumulation of Friends and Aquaintences and ex-Co-Workers that you care about- some within a few blocks of here...WILL I EVER SEE THEM AGAIN?

I pass the Duolingo multiple choice Learn the New Language tests... Ace them usually. The next day, have little or no idea of the answer that yesterday I was able to pass.

Don't read books or magazines any longer.

Resistance is futile. Flailing is painful. Acceptance- hurts less. And this can all get better tomorrow, Thank You.:angel:

Started to write a note to a friend at Xmas, wrote one sentence, set aside.