investigating symptoms and discovering im 4/4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
NF52
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Re: investigating symptoms and discovering im 4/4

Post by NF52 »

leolouo wrote:As I understood it, pathogenic experiences, trauma in the head, and quality of life are very important and i am 0/10 on all those points. ...Thank you Roxanne for the comforting answer, im not the kind to quit anyway, just very anxious when i confuse my words or find myself looking for word i use everyday for very long seconds.
I wasnt like that before.
Hi again!
Since you mentioned being in Quebec, bonjours! And that makes it very likely that you are bilingual, c'est vrai? If so, you are already miles ahead of many of us here, since your brain has been doing code-switching for years. So when you have to pause and think of an "everyday word", I'm guessing your brain spits out annoying suggestions of other similar words for the same category ("wrench" for "pliers") or starting with a similar sound "Investigate" for "interrogate"). That is much more likely due to your sleep loss and your worry than anything remotely related to ApoE4. People with early stage Alzheimer's disease don't pause for several seconds to recall a word; they forget what they intended to say entirely, or talk in greatly reduced sentence quality. My mother-in-law was a great example, when she would say "You know that place where the Irish eat? That's where I want to have lunch" She meant Tim Hortons, but couldn't say "that place with the donuts and sandwiches" or "that place on Main St."

Having spent several years working with kids (and experts) on traumatic brain injury, it's remarkably easy to mimic it in everyday life: just go without sleep, or get the flu, or have high stress. Our brains are resilient, though, and I guarantee you that the head injury you had with less than a minute of possible loss of consciousness isn't considered a "coma" which is a persistent loss of consciousness with varying levels of arousal. The fact that you felt both less depressed and less happy afterwards suggest that your "affect" (your emotions) was a bit "blunted" (fewer ups and downs, with sometimes that feeling of apathy you mentioned.) Those effects typically wear off within weeks to months and are almost certainly not related to what you describe now, 7 years later. (Depression and anxiety and "medical trauma" caused by an uncertain diagnosis of confusing symptoms can absolutely cause mental confusion. It's why doctors send people home with detailed discharge instructions even for an ear infection. We don't process or remember things when we're facing a medical scare.)
So let me gently suggest that instead of viewing your past medical issues as Permanent, Pervasive and Personal, you try to look at them from a perspective of being "Temporary, Specific and External". They are things that happened to you; they have not permanently changed you. Nor has ApoE 4. I had decades more of poor sleep, poor eating and poor exercise than you--and am still testing just fine in clinical studies of healthy people with ApoE 4/4 at age 67. (And am one of several hundreds in the same study.)

I would be cautious about ANY source from more than 10 years ago claiming someone your age had early onset Alzheimer's disease due to ApoE 4/4. Given the improvements in PET scans and cerebral spinal fluid biomarkers, It's seems far more likely that they had something else that was mis-diagnosed or had one or more of the diagnosed variants for dominantly inherited EAOD. So I would again gently suggest that you give yourself a grade of at least 9 on brain injury and pathogenic risk, and even on genetic risk. When you are 67 (my age), your risk of late-onset alzheimer's will still be only 7 percent before your 68th birthday.

Your quality of life is worth your hard work, and that of your doctors. Take the walk with your girlfriend and confide in her, as Roxanne wisely suggested. Allow yourself to say "this will get better." And keep us posted, mon ami.
4/4 and still an optimist!
leolouo
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Re: investigating symptoms and discovering im 4/4

Post by leolouo »

That is true my english is alright and i, indeed, confuse words for the same <sounds< because i dont have temporiraly access to what i meant anymore. Let's say im looking for the word Towing, ill end up in a zone where i think Tourist, wondering what word i even meant to look for, then I find back the zone but it seems like a lot of effort compared with how I used to think. I dont forget things for minutes, but i forget things all the day. The typical i get up and dont remember what i looked for for a few seconds. Im talking to someone and it takes me several times several second to recall what i wanted to say when i was thinking it. Everything to concentrate seems to be an effort. I can even forget which month we are for a few seconds, honestly, i recall having a way more vigilant brain that this.
If i relate how i felt after my brain incident with today, its because I feel a huge similarity, a way of being able to think and reason but feeling and assessing the <presence< of things and thought takes time. I dont think it was apathy because I had emotions, its just they are so long to come they arrive too late me to grasp them and feel reduced. It might feel like a bit of an apathy sometimes but it really feel like a <tempo thinking< thing that increased with time. I dont see this as permanent tho, thats why i changed a lot of things in the past years, intuitively, and why ill change even more, thanks all of this information here.

Ill do my best to investigate the quality of sleep because I feel its determinant here, but last time my neuro told me it wasnt that urgent to get a polysomnography, i was quite sadened, i want to ask her again. Hopefully, now she will learn that im an ApoE4 which predispose to sleep troubles.
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SusanJ
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Re: investigating symptoms and discovering im 4/4

Post by SusanJ »

leolouo wrote:Ill do my best to investigate the quality of sleep because I feel its determinant here, but last time my neuro told me it wasnt that urgent to get a polysomnography, i was quite sadened, i want to ask her again. Hopefully, now she will learn that im an ApoE4 which predispose to sleep troubles.
Maybe print out the following article for your doctor. The research was in the Neurology journal. Sleep is so foundational for us E4's because it's when the brain "takes out the trash".

https://www.newscientist.com/article/22 ... your-body/
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Re: investigating symptoms and discovering im 4/4

Post by leolouo »

The article is dépressing, saying it might be the beginning of the disease instead of a cause...
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SusanJ
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Re: investigating symptoms and discovering im 4/4

Post by SusanJ »

leolouo wrote:The article is dépressing, saying it might be the beginning of the disease instead of a cause...
The reality is that many research articles can be depressing to us E4s, because we've all done things in our lives to increase our chances of dementia, but the key is to learn from them and do the best we can to minimize those risky things every day going forward.

Sleep is something you can tackle and it will improve your brain function, while your doctor looks for other answers. There are other research articles on the importance of sleep and you can search the site for others, but this one might move the needle for your neurologist.
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