[fadetoblack]

... when people say they might have something and they are probably just worrying and other people have it worse cuz they have the real thing.

But here goes. When I was a kid my granddad over not a very long time changed. Since he had been depressed at times when he was young it was taken for granted that he was "just" mentally ill and they locked him up.

Thing is I am pretty sure he had dementia. Back then, this is long ago!.. they didn't really know of dementias, not of the types not causing memory loss.

His family history is unknown as his parents died of infection very young.

He used to be outgoing, friendly, sensitive but the life of a party kind of guy. He liked talking with us kids and just chilling. What speaks against dementia is his age, he was just bit short of 70.

After the change he was quite aggressive in ways, easily frustrated, i don't know why, if he couldn't do everything or if it was just his mood. He didn't like us kids anymore. He had spells where he just shouted and acted out. He cursed A LOT, and he never used to do that. He was both restless and not really doing anything. He started to have a lot of compulsions.

They took him home but had to put him back in the asylum because he started his bad behavior at once, they could not handle him. They all thought he was mentally ill but from what I hear it is uncommon you get severe mental illness at that age. It was nothing like the manageable spells of sadness he had when he was young. This illness in his old age changed every aspect of his personality. He also sometimes soiled himself, and I do not think this is included at all in the type of dementia I'm suspecting.

So where do I fit into this? I'm in my 40s and my sense of language is getting really weird. I can't but wonder if this is somehow related.

It was noticeable in my second language first. I just lost words, I knew what the world meant but I could not produce it. It was simply lost. I thought it was just me getting bad at that language. But then it started to happen to my first language also. Now I replace words on a daily basis. I look for the word and it is gone. Doesn't matter if I'm given hours, I cannot produce it. So in a normal conversation of course I replace it. It happens quite a bit.

The other thing is that when I write just to myself, I no longer care about words needing to be in the right order. It is a hassle to make grammatically correct sentences. It was never a problem, I write novels and poems, but now my language to myself looks like someone who learned it late in life and does not understand word order wrote it.

The third thing is I somehow get words mixed up, words I know and can say with ease, but when I speak them sort of in a hurry, I might say them wrong, one sound in the word is replaced by another sound. I clearly hear that it is wrong and can correct myself.

I more and more prefer written language, because then it doesn't show that I'm struggling, I can just take a small break and start again. But I have gotten worse at spelling. I used to never make mistakes and now I look at words and I have to look up the spelling.

I also constantly say the opposite word for what I mean. This I'm not sure is anything because I always did this slightly, no idea why, but it has gotten bad.

It really surprised me when I collected the facts of what my issues with speech are, and when I looked it up it almost totally matched something called progressive nonfluent aphasia. Oddly enough it does not worry me one bit. It should, because it is through language I exist.

I also have no plans of talking to anyone about this. I don't know why I'm not going to, I'm not embarrassed.

And I have zero issues with processing speech of others. And I still speak at my normal speed.

Anyway this aphasia thing (yes I know it is silly thinking I might have it, writing essay length posts....) actually is a subtype of frontotemporal dementia, the type of dementia I think my granddad had.

Thing is my mom's mind at 70 is perfect. She has no issues with anything brain and age related, her brain is like a 30 year old's.

If this was genetic my mom would sure have it, right? And with FTD if even inherited, you get the same subtype, right, not a different one?

I'm probably just getting stupid or something. Still I feel this is quite a weird problem to be developing. I guess I will know if it gets really bad.

[kiwi33]

Hi fadetoblack

I think that you have raised a lot of complex issues in your post.

One is this:

"Thing is my mom's mind at 70 is perfect. She has no issues with anything brain and age related, her brain is like a 30 year old's.

If this was genetic my mom would sure have it, right? And with FTD if even inherited, you get the same subtype, right, not a different one?"

The genetics of FTD is complicated. In many cases it arises from what is called an autosomal dominant mutation in one of a number of genes. What that means is that your grandfather's possible FTD might have arisen from that - one possible "bad" autosomal dominant mutation might have been causal for him.

If that was the case for your grandfather (which I do not know) your mother would have had a 50% chance of inheriting that mutation from her father. The fact that your mother is fine means that she has not inherited that possible mutant gene and so you have not either.

All the best.

[fadetoblack]

Ah... so it is a dominant gene... and it always shows at some point in life i assume?

[kiwi33]

Mutations in quite a few genes have been linked to FTM and the list is growing.

One is MAPT, which codes for a protein called Tau - mutations in this gene are linked to FTM with parkinsonism.

Another is GRN, which codes for a protein called Granulin. These mutations account for about 25% of FTM cases and have high penetrance, which means that somebody with it is very likely to get the disease.

Mutations in the VCP gene, coding for Valosin-containing protein, has been implicated in a disease called multisystem proteinopathy, which can include FTM-like signs.

In theory screening for these mutations is easy (it would take somebody in my research lab about a week or so) but I don't know how available it is in commercial genetic screening labs.

[EnglishDave]

Quote

I know this is annoying to others...
... when people say they might have something and they are probably just worrying and other people have it worse cuz they have the real thing.

Quote

Hi Fadetoblack,

This is not annoying, you have a valid issue regarding the workings of your brain - the most important part of oneself. My dear Mum suffered terribly with Alzheimer's before we lost her to complications - mercifully. I feel nothing but concern for you as you attempt to navigate this.

Of course, it is also an issue for myself, not now but in the future. My language skills have taken a severe battering, from perfect to searching for simple words, meanings, even spellings and grammar. I tend to ramble and lose track of my thread. But for now I put all this down to high doses of medications and stagnation.

I fear the day when I come to believe my cognitive issues are due to any form of Dementia. I have high hopes my ailing body will pack in long before I reach that time.

So never feel negative in any way about voicing your health concerns anywhere across the Forums.

Dave.

[fadetoblack]

Thanks.

Sometimes I think I'm getting punished by a higher power in the worst way. I've always been good with words. My words have been key to understanding my environment since I'm really bad at reading facial expressions and understanding social cues.

[fadetoblack]

Now I forget "everything", it's like I have no working memory. I was going to hand the dog back to my friend after dog sitting and I brought the leash and my house keys. I DID NOT BRING THE DOG.

When I have to remember more than one thing, something else just disappears.

This probably does not belong in this section anymore but here goes... Half of us Lupus/Lupoid disorders sufferers have iron anemia. Not once, but most of the time. Still, this is not seen as a symptom of Lupus. It is always blamed on something else, like poor eating habits. Then why do half of us have it? Why does it come back over and over?

I've cheated on my checkups since my last clinic lost my labs and their doc verbally abused me and also took back my referral simply by pushing a button making it look like it never existed (because I knew something he didn't.... dang narcissist!). Anyway, it took me almost two years to reschedule my "yearly" checkup somewhere else. I'm tired of being pushed around in this crappy system of ours...

Anyway, came out I had very severe iron deficiency with anemia. Maybe no wonder my brain's Swiss cheese. I didn't know much about the mental side effects of it, but now I do. I've been treated "aggressively", retested and they say I might have more treatment. My fear is now because I do fear quite well!.. is that they will tell me that "Oh, you only needed one treatment, you're fine now!" because I feel the same as before treatment. Out of breath and totally stupid/forgetful.

[LifeForce]

Originally Posted by fadetoblack

Now I forget "everything", it's like I have no working memory. I was going to hand the dog back to my friend after dog sitting and I brought the leash and my house keys. I DID NOT BRING THE DOG.

When I have to remember more than one thing, something else just disappears.

This probably does not belong in this section anymore but here goes... Half of us Lupus/Lupoid disorders sufferers have iron anemia. Not once, but most of the time. Still, this is not seen as a symptom of Lupus. It is always blamed on something else, like poor eating habits. Then why do half of us have it? Why does it come back over and over?

I've cheated on my checkups since my last clinic lost my labs and their doc verbally abused me and also took back my referral simply by pushing a button making it look like it never existed (because I knew something he didn't.... dang narcissist!). Anyway, it took me almost two years to reschedule my "yearly" checkup somewhere else. I'm tired of being pushed around in this crappy system of ours...

Anyway, came out I had very severe iron deficiency with anemia. Maybe no wonder my brain's Swiss cheese. I didn't know much about the mental side effects of it, but now I do. I've been treated "aggressively", retested and they say I might have more treatment. My fear is now because I do fear quite well!.. is that they will tell me that "Oh, you only needed one treatment, you're fine now!" because I feel the same as before treatment. Out of breath and totally stupid/forgetful.

I do hope you did seek a medical assessment for your symptoms, because they are not typical of normal aging. I know your post is a few years old, but it would be great if you could let us know how you’re doing now, if you come back on sometime.

I have similar symptoms to those you have described, but I only recently considered that there might be something wrong. I think my diagnosis has been delayed because I have ADD/ADHD, which does affect executive function, as well as Fibromyalgia, which can cause brain fog. But, my ADD symptoms were getting much worse, and like you, my working memory barely seems to be working at all. My ADD meds just didn’t seem to be working nearly as well as they used to, even after changing from one medication to another.
Because I thought my grandmother had Alzheimer’s, my psychiatrist referred me for a brain MRI and a SPECT scan. He didn’t expect to see much, but thought it would at least give a baseline to compare against, as I age (I’m currently 51).

Unfortunately, the SPECT scan, in particular, was abnormal, and the radiologist’s comment was that the scan “shows a pattern of hypoperfusion of a neurodegenerative disorder such as Alzheimer’s disease.”

I’m still going through the diagnostic process, but as the hypoperfusion is primarily in the frontotemporal region of the brain, combined with the type of symptoms I have, I think it’s very much more likely that I have Frontotemporal Dementia than AD.


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