Frustrated by my memory loss

[kohai]

Hi everyone,

This is my first time posting and I'm really confused, frustrated and not even sure if should be in this group.

Way back in my late teens (I'm now aged 50) I was doing what was then called a BTec which I think now translates as a HND in care work.

I worked in all areas and went on to be in nursing for 18 years I loved what I did that much. My main paper for my qualification was on Alzheimers, and no pun intended here but while I learnt a huge amount from carers and spouses who cared for their loved one (one even wrote a book and sent me a rough draft to go through) but I can't remember any of what I learnt all those years ago.

I was concerned with my memory recently as since my early twenties onward I've had an almost eidetic memory. It amazed people just how much knowledge I could retain and how long for. Now, its all gone.

I spoke with my doctor sometime within the last 3-6 months about my memory, or lack of, so he tested me with various things, like putting the numbers on a clock face and some other things I don't remember now. But one test clearly stuck in my mind, probably because it frustrated me so much no matter how hard I tried.

He told me something along the lines of;

"I'm going to give you a name and address I want you to remember, then ask you a series of questions, then. ask you to repeat the name and address."

(seemed easy enough)

"Mr Michael Davis, 32 kings road, London"

" So how long has this memory problem been bothering you?"

(I answered)

"Do you know worry a lot about this?"

(I answered)

Then he asked me to repeat the address

All I got right was Mr Michael Davis, Kings, London.

Road is one of the most commonest used next to Street, yet I came out with every word imaginable except the right one. Same with 32 (which by the way, I cheated and had to scroll back up on my phone to see which number and street/road I'd written above), but nope, I got so frustrated as I was so convinced it was 39 or 42 for some reason.

Even now with phone numbers, people give me their landline number and give me the first 3 numbers, by the time they've said the 3rd one, I've already forgotten what the first number was, so I have to keep explaining to people I have memory issues and can they please just give me one number at a time and wait till I've written it down and repeated it to them before they give me the next number. So far everyone has been really great and understanding, but they don't realise I'm incredibly embarrassed and frustrated.

My doc said that may be it was the medication I'm on. But it says nothing on the leaflets for Oramorph, diazepam, 70mg Morphgesic twice daily and Naproxen (anti inflammatory) about may cause memory loss. And I only use the Oramorph and diazepam when I have spinal spasms, which could be anywhere from 3 in one day for 4 days or none for 3 days. (that's just an example).. But could he be right that its just the meds causing this? or should I get a second opinion?

[ChristianElliott Partner]

There are a few possibilities for your memory loss that come to mind:

The meds you mention can cause memory loss: memorylosstest.com/prescrip...

Chronic pain and menopause can also impact short term memory.

Try this working memory test - most people can remember 6-8 numbers:

memorylosstest.com/free-wor...

[kohai in reply to ChristianElliott]

Thanks for the reply and the link which I'll try a bit later when its late and I can concentrate without being disturbed.

Chronic pain, yes a very good possibility but not menopause. Although I'm 50 now, I had, for medical reasons, a hysterically when I was aged 32, then hit full menopause two years later, so I think menopause can safely be ruled out. I didn't actually know chronic pain itself could be a cause though, so that has given me something to think about. Thank you.

[jeffcobb Ambassador in reply to kohai]

Kohai; just a note on chronic pain to think about after you read my longer post. I too have chronic pain from things like sciatica and arthritis, not that it matters. The thing to know about chronic pain and dementia (as in AD, etc) is that if the frontal lobe gets hit like mine, inhibiting executive function, that loss of executive function means your mind can only really "multitask" on one or two things with any success...and so in this state/condition, if you are listening to (for example) directions to perform a task, while maybe noodling on what you will do tomorrow (again, for example; two thought processes) and what do you suppose happens when poorly-managed constant pain is there? I have noticed pain like that triggering fog states, or even simply my mind can't process what its hearing because its stuck on the pain, like you can't rip enough of your focus away from the pain long enough to process what you are hearing. Hence, five minutes later if you are pressed on what was said, even money says you will blow it. Its just a nature of how it works with me. There is alot more to this but this is just a reply; I have other stuff here that explains it better.

Peace

Jeff

[jeffcobb Ambassador]

Greetings Kohai; I am not a doctor or a student, simply a patient with dementia. Mine is Lewy Body Dementia which is like a cross of Alzheimers and Parkinsons, sharing symptoms of both. While I never had your memory prowess (would have killed for a skill like that in my last profession), I was always pretty high-functioning in that dept and so have had an insiders view of the breakdown of my cognitive processes. Just some quick thoughts from someone who walked that road:

* First, we all know that (frankly) stupid paper test, its a quickie many neurologists give in this country and frankly if you actually fail the things on that test (our version sounds very similar to your own), you don't need that test to tell you something is wrong. I got lost in the acronym gobbledygook up there about your job but I did catch the words "nurse" and you did some AD research so perhaps you are aware of this other test, which is basically a 4-hour long neuropsych test where almost everything is very close to the things you mentioned failing at. This test is designed to tease out there failures and will tell a far more definitive story about whats going on between your ears. Get this if you can, it will give you some pretty solid answers, perhaps not to the cause but it will give you a very accurate measurement of your cognitive state. You know how you have been all your life: when you see what they report, it will not only be your first definitive bit of proof that the decline is not all in your head. Well it is but its not imagined. It will also help point out some next steps.

* I have never had your level of recall but for certain things I was pretty close...and as I am going through this now, I am realizing dementia and memory loss aren't exactly how I thought they were, and this the root of a batch of questions I have for you:

1. Have you noticed simply inability retrieve information or have you also noticed the recall of false information? By this I don't mean if you try to recall what you had for lunch that you are intentionally presenting a falsehood, but rather I am seeing in my own head where my wrong replies are because I was actually recalling something from last week for lunch.

2. Related to the above I would love to know how much of memory loss is in fact true loss of stored memories, the false retrieval of memories and how much of it is simply the memory not being created in the first place (or again, created with faulty data).

3. Don't know if you are there yet; seriously I hope you never get to the stage of realizing you have a degenerative brain disease. But if you do get there, I would be interesting to know if you experience another aspect of memory loss that many of us here do: when your loss becomes frequent enough where its a semi-daily thing, when looking at your memory loss, do you mentally see ...like empty spots where the memories were but no longer are or do you like us, dont even realize something is forgotten, our minds carefully stitching together the last thing you knew before the period of loss with the first thing you remember afterwords. IOW, to us, our memories seem seamless, there are no obvious chunks of missing memory. This also has the rather bizarre knock-on effect of making you lose much or all sense of time. To me, time feels speeded up; calendar weeks go by in what feels like days to me.

* As far as the meds go, there is a simple bit of logic that might help solve the question. As you should know from your studies, Alheimers happens when protein deposits happen in the brain, causing bits of brain death here and there. It is what I think of as a shot-gun effect; if you shoot someone with a shot-gun, yes you will almost certainly kill them, you can rely on that BUT due to the nature of a shot-gun blast/shell, you have zero chance of predicting where each bit of shot will hit the intended victim. Same thing for this IMHO: the where the deposits hit are random but with careful examination of the brain you will be able to make some rough conclusions, such as your working memory issues (what the part of the test you failed at was about), you can usually map those defects to specific regions or lobes of the brain. For example, the frontal cortex gets hit, your executive function goes to hell. The bottom line is, if you can detect more than one specific defect and map it to more than one region of the brain, logic suggests its unlikely that a single pharmaceutical caused it. Its not impossible but pretty unlikely.

* Lastly, I don't have a clue about how things are medically in the UK but in the US, dementia is poorly understood by a pretty big cross-section of the medical community beyond the stereotypical "Old Timers Disease"...you may have to so some of the heavy-lifting on your own if you suspect something is wrong. And unlike pretty much anything else I can think of, a degenerative brain disease does not get better by ignoring it. Or waiting.

Peace

Jeff

[kohai in reply to jeffcobb]

Hi Jeff, thank you for the descriptive reply.

I don't mean to ramble on endlessly, but ever since I started having memory issues, I also seem to have this difficulty in getting across a clear, concise one or two line response. Therefore I end up giving long winded explanations of what I'm trying to say. I'll have to reply to your questions when I have a clearer mind. I did reply once already, at length, but then deleted it all once I realised I was saying a lot but not actually answering the question. I've been focusing on the memory issue of what people are saying daily to me now, in the present. I hadn't actually given any thought to what I've forgotten from the past. I guess I was too scared too incase I couldn't remember anything.

I will go over your questions again though as I need to give them some thought before answering.

Jules

[jeffcobb Ambassador in reply to kohai]

Kohai, I hate to say it but you are describing another classic aspect of dementia, expressive aphasia, of which I have it too, and EXACTLY like yours it sounds. I was an engineer/inventor type and part of being good with that is being able to conceive something new, as in never been described before, and then expressing that concept and design in language peers can understand. It is the Concept->Expression thing that is broken in me now. Easy example is, I grow cannabis to treat some of the worse symptoms; it works but thats not the point. The point is, I have done all the gardening, from propagation thru cloning and directed seed creation to all methods of doing it so I could make a system that a disabled person like me could use. Thing is, I am at the edge of being able to use it but my wife, who really wants to learn how I did this stuff, is stuck because even though I have worked on this every day for 3 years, I stumble and fumble (and "write a book when a page will do") trying to get the idea out, even if its something as basic as transplanting or seed germination. I heard your words and they rang the bell. There are like 15 kinds of aphasia according to the NIH but the most common ones are simple, word-based issues. The one we have is...pardon my expression but a cast-iron bitch if you are accustomed to making yourself understood.

And BTW why do *you* think *my* replies are so long??? Heh. As I said I was an engineer and one of the age-old put-downs for people in my profession is, "you ask him the time, he explains how to build a watch". So I have actually had some years of practice at this.

Few things I want you to kinda watch for:

* You find yourself more easily startled by people/pets coming into the room for example (we have to "pound rescues" as you put them).

* You find yourself becoming crazy-early or crazy-late for things (again, when you didn't do it before).

* Your words also lead me to ask this one: do you seem to have periods of relative cognitive clarity and then others of relative mental fog? Related: if so, do the fog periods seem to follow periods of stress?

I have reasons for asking them all. Not nosy, you just seem to be describing something I know of. Well, me and others like me.

Peace

Jeff