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Welcome to the D Club

WJG

Registered User
Sep 13, 2020
112
0
I think you were very lucky to be offered a SPECT scan! Most people with suspected dementia get a CT scan which shows much less. But I really don't think you have the 'everyday' sort of dementia...

For most people, because dementia comes on gradually, often over several years, by the time it comes to diagnosis I don't think a scan is always necessary anyway. Certainly for mum, the diagnosis was merely 'stating the b*****n' obvious' and the consultant was able to diagnose after just a brief visit to mum, presumably talking with the staff and also after a long conversation with me. That seemed to tell him more than her scans. But mum could have been a poster girl for dementia - she showed every classic symptom/behaviour, so there was no question really.

I think your case is very different. And that's why those cognitive tests tell the medics far more than a scan would, because they can pinpoint which particular abilities are affected. e.g. maybe you know the Prime Minister but you can't count backwards or copy a shape. This should give them a better picture and hopefully help them reach a suitable diagnosis. A word of warning though - they may not be in agreement! You will read many posts on this board where people (who clearly DO have dementia) are still undiagnosed or their diagnosis is disputed by different doctors. Or where a previous diagnosis is overturned or changed.

Maybe one day there will be a simple blood test that gives a definitive yes/no result instantly.

Keep us posted!
I keep reading that 'a new blood test can diagnose Alzheimer's' and 'this new app can diagnose dementia'...but there seems to be a gap between technical advances and practice on the ground. I suspect I am reaping the benefits of (as you say) having a condition that isn't straightforwards, having a switched on psychiatrist and mental health team , being in Scotland which has some very specific dementia policies and funding and living in a city with a specialist clinic and University research facilities.
 

WJG

Registered User
Sep 13, 2020
112
0
More neuropsychological tests yesterday:
Repeating back sequences of numbers - then reversing the sequences
Listing as may animals and boys names as possible in a minute
Sorting lists of random numbers into arithmetic all order
Repeating back a list of words - then being asked to say which of these were in various categories - then given a further list and had to say which of the original words were in it.
Copying a complex geometric figure, then doing this again from memory
Repeating back a short story of a few sentences, then a longer one

Some of these things I found easy - some hard. Sometimes I became aware that I was having to concentrate hard and really think through processes that a few year's back would have been second nature to me. I was particularly dismayed to lose track of the longer of the two stories. I used to work in radio and do a lot of audio editing - to do this you need to have a good memory for the words both before and after the edit. Seems like that skill has gone.

Felt remarkably tired after an hour of mental gymnastics - back for another two sessions next week. still puzzling over a test from last week where I was shown some pen and ink drawings and asked to name the object - one was a Bishop's mitre that seems very culturally specific, then there was a horse's head with some kind of mask - I'd no idea what this was, and neither it seems does Google. Then there was some kind of blown glass chemical instrument that I vaguely recognised but couldn't put a name to...and I can't work out how to search for it online. It worries me tha there are aspects of these tests that might relate to one culture but not another. For instance, I was asked if the word 'gasoline' had appeared on a list yesterday. Not sure I've ever used that word in my entire life.

I have to say, I'm impressed by the service I'm getting to try and get to the root of my problems. A CT scan + a SPECT scan + 4 test sessions + specialist clinic appointment + ongoing support from a Mental Health team won't come cheap. I hope I'm worth it.
 

WJG

Registered User
Sep 13, 2020
112
0
More tests today - although easily he hardest was find CLINIC 4. It would seem that no one involved in signposting Edinburgh's Western Hospial has ever stopped to consider how signage should actually work in terms of getting people to places.

Anyway, final one hour session of three: completing sentences with a single word, completing with an inappropriate word, remembering stories, mental arithmetic, sorting into order numbers and letters randomly scattered on a page, and predicting a sequence, the rules of which change. Found the random numbers exercise really difficult.

I've also written out a set of notes which I provided. Realised yesterday that I seem to be having problems remembering some names - just couldn't sum up a name of an MEP I'd once interviwed. I know we can all experience this sometimes, but it feels different to me. As if the name is more obscured behind a thicker veil.

Results from tests in a couple of weeks as they take time to score. Still don't get this: surely these tests are all now available in iPad or PC friendly versions that could give the score instantly? It can't possibly be a good use of psychologists' time to have to manually score, surely?
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,026
0
High Peak
Thanks for telling us about your tests - very interesting! Seems to me you are getting a really thorough testing, presumably designed to identify which areas of your brain may be affected. Whilst a machine could no doubt 'tot up your score' in an instant, I think the results need some interpretation and need to be looked at together with all your previous tests. And even so, there may not be a definite answer! Don't forget also that whatever type of dementia you may (or may not) have, identifying it is only one part. They can write their answer in block capitals and underline it in red but that won't tell you how the illness will progress or any sort of time scale. Neither will your test score show which parts you found particularly difficult.

From the details you gave it seems these tests were designed a long time ago, clearly with no regard to culture or indeed education. Many people would not recognise a bishop let alone know what his pointy hat was called! I can't help thinking the tests are very like IQ tests (perhaps that's what they are based on?) which are designed to test the various different areas of thinking. And I think they are also really hard! I know plenty of much younger people, some with degrees, none with dementia, who would really struggle with some of those questions.

But I think YOU can learn a lot from the tests and how you found them, for example, you were surprised you couldn't recall the long story but it's clear you whizzed through some sections! I imagine that knowing which are your 'problem areas' would be helpful. It would also be useful to repeat the tests after, say, a year to see if there is any deterioration - or improvement!

Finally, I bet if you keep asking yourself the name of that MEP you will remember it eventually. If you keep thinking about the interview, where it took place, the things you discussed, etc, etc. you will probably remember. Usually our memories are still there, we just start to struggle with the 'retrieval' process, but often we can 'cue' ourselves - a bit like you would giving hints to a child: 'What's the name of that animal that lives in a field, a bit like a horse, often brown or grey, begins with a D...'

Keep us posted!
 

Spamar

Registered User
Oct 5, 2013
7,673
0
Suffolk
Please remember that some people, even in the early stages of dementia, are unable to use iPads, PCs or phones, even switch on a radio.
 

WJG

Registered User
Sep 13, 2020
112
0
And here we go with a tentative diagnosis and....more scans and more tests!

Had an appointment yesterday at Edinburgh's plush Anne Rowling clinic. A lovely neurologist took a detailed history and gave me a basic neirological exam. Even took me through the images from my CT and SPECT scans. 'The normal brain is completely orange' he said, showing me a picture of my orange brain with its strikingly bright blue blobs just where my parietal lobes are. Oh, and just look at that interestingly enlarged gap between your skull and your brain.

So now I oficially have Mild Cognitive Impairment, what a charmingly misnamed syndrome. I've already been told by a friend that everyone at our age has mild cognitive impairments. In vain, I try and struggle to explain that that's not really so. That the impairments are mild compared to those of folk with dementia. But it's not like normal ageing at all, only wish it was.

But the big question is - why do I have MCI, and does this mean that my cortical sniffles will turn into full blown brain flu? The neorologist doesn't know....but he has a plan. He's careful to explain that not everyone with MCI develops dementia, and that there is no way of assessing any future progression without a baseline. He's also careful to explain that whilst my SPECT image is typical of early Alzheimer's development this doesn't mean it therefore must be.

So now I'm booked in for an MRI scan to see in yet more detail which members of my Neuron Army have gone AWOL, and for a Lumbar Puncture to test for tau to see if Alzheimer's is behind my condition. I'm glad to keep Edinburgh's radiologists in work.

In the meantime I've been sent the draft of a new book about Alzheimer's to comment on. I was fascinated to read the story of the discovery of the disease, and to follow the interviews between Dr A and the first patient he identified as suffering from it. Can't help but think that his story could make a fascinating film. When he first presented his findings to a panel of fellow Doctors, none of them had any questions for him!
 
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WJG

Registered User
Sep 13, 2020
112
0
Please remember that some people, even in the early stages of dementia, are unable to use iPads, PCs or phones, even switch on a radio.
Yes I accept this ( although evidence suggests that there are plenty of people who can, with help) - but even so the psychologists could electronically score tests.
 

WJG

Registered User
Sep 13, 2020
112
0
At recent interview with nerologist I asked him about why I have no obvious memory problems - and yet am being investigated for possible Alzheimer's. He explained that memory lapse isn't always the first sign - rather that can be behavioural changes, as in my case.
Yet virtually every website to do with Alzheimer's quotes memory loss as the single greatest factor in determining a diagnosis. So why is this? changes in behaviour as a symptom are sometimes not mentioned at all, or only given a passing mention.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,777
0
Yorkshire
the catch is that every person is individual and presents in their own specific way .... which is why a diagnosis comes from a mixture of medical assessment, various tests and looking into changes in behaviour, abilities to do tasks and memory issues

on this page from the main AS site, you'll notice all the caveat words eg usually, generally which recognises that not all people show the 'usual' syptoms .... and different forms of dementia present differently too .... so a diagnosis can be as much an art as a science

 

WJG

Registered User
Sep 13, 2020
112
0
the catch is that every person is individual and presents in their own specific way .... which is why a diagnosis comes from a mixture of medical assessment, various tests and looking into changes in behaviour, abilities to do tasks and memory issues

on this page from the main AS site, you'll notice all the caveat words eg usually, generally which recognises that not all people show the 'usual' syptoms .... and different forms of dementia present differently too .... so a diagnosis can be as much an art as a science

Yes but .....
The linked page is mainly about memory loss as the key symptom. At the bottom of the page behavioural changes are mentioned.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,026
0
High Peak
I think that changes in behaviour are often a first symptom but it's a very difficult thing to quantify!

When the person of concern is someone close to you, you become very aware of memory losses or repeated questions. These are 'black or white' things and raise immediate red flags. But if someone is more moody than normal, or less compassionate or seems a bit down or a bit vague, you put it down to 'normal good days and bad days' - which everyone has!

In my mum's early days she would phone to say she'd fallen out with a neighbour or that said neighbour was talking about her on the bus. Or she'd phone up and just have a bit of a rant about things in general. She also struggled a bit with organising dates. I'd noticed some memory loss but hey - I forget stuff sometimes, who doesn't? And she was in her mid-eighties.... As time went on she deteriorated but only a bit so it was very easy to dismiss the behaviour changes as 'she's just getting a bit old and quirky.' But when I saw her or spoke to her, every time she forgot a major part of our life history or something I knew I'd told her, there was a 'ding' in my head - I really noticed the memory lapses. But things like going out less or being reluctant to do new things went almost completely unnoticed.

I'd describe most of mum's other early symptoms as mum being the same as always but a bit moreso. It was only the memory issue that was completely new. So perhaps that's why memory loss is often cited as the first warning sign, simply because all the other stuff is very individual to the person and incredibly difficult to quantify. Indeed, it's the reason my brother was in denial about mum's condition for years - he just couldn't see it at all.

And don't forget that memory loss is not present in the early stages with some types of dementia.

Keep us posted! It is informative, fascinating and extremely helpful to read your experiences :)

(BTW, can you remind us how old you are? Thanks!)
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,391
0
Kent
At recent interview with nerologist I asked him about why I have no obvious memory problems - and yet am being investigated for possible Alzheimer's. He explained that memory lapse isn't always the first sign - rather that can be behavioural changes, as in my case.
Yet virtually every website to do with Alzheimer's quotes memory loss as the single greatest factor in determining a diagnosis. So why is this? changes in behaviour as a symptom are sometimes not mentioned at all, or only given a passing mention.

Is it possible your neurologist is avoiding the term Dementia and is using Alzheimer`s as the most commonly understood diagnosis.

There are dementias which do not show memory loss in everyone. I may be mistaken but perhaps Dementia with Lewy Bodies and Fronto Temporal Dementia do not always present with memory loss as the first sign.
 

WJG

Registered User
Sep 13, 2020
112
0
I’ve now had the results of my neuropsychological tests, which show some signs of memory loss - which I wasn’t aware of. The results are a mixed bag: I have poor verbal memory but good visual memory. I did badly on the ‘easy’ trail finding task, but well on the harder one. I performed poorly on completing sentences with appropriate words - but well on using wrong words.
The Psychologists seem puzzled, as they can see no obvious pattern beyond being able to say there is definitely something wrong. They’ve gone off to have a think, and so have I.
I’m mainly struck by the finding about memory. I haven’t been aware of having a memory problem before.
At one point I’m asked ‘How would you feel if this does turn out to be Alzheimer’s?’. I can’t find an easy answer.
 

canary

Registered User
Feb 25, 2014
15,737
0
South coast
At recent interview with nerologist I asked him about why I have no obvious memory problems - and yet am being investigated for possible Alzheimer's. He explained that memory lapse isn't always the first sign - rather that can be behavioural changes, as in my case.
Yet virtually every website to do with Alzheimer's quotes memory loss as the single greatest factor in determining a diagnosis. So why is this? changes in behaviour as a symptom are sometimes not mentioned at all, or only given a passing mention.
The thing is that with Alzheimers memory problems are the usual first symptoms (even if relatives arnt aware) and this is easily picked up with the memory tests, so this is what information about Alzheimers will focus on. But there is a rare variation (known as behaviour variant, or atypical Alzheimers) where the damage starts in the frontal lobes, rather than the hippocampus. The frontal lobes deal with behaviour and problem solving and the hippocampus deals with memory, so if you have this rare variation you dont get memory problems until quite late on, but you do get lots of behaviour problems and difficulty making decisions. This is much more akin to frontotemporal dementia (FTD), but caused by Alzheimers. It is very rare, so that is probably why you cant find much about it and generalised information doesnt mention it. From what you say it sounds like this is what the neurologist thinks you have.
 

WJG

Registered User
Sep 13, 2020
112
0
Troubles seem to come in battalions, don't they?
I have been experiencing vision difficulties, and now discover that a literal blind spot in my left eye is being caused by some sort of fluid build up, and I'm developing a cataract in my right. Fabulous, apparently this could all get a lot worse without quick treatment.
I wish my increasingly poor vision could stop me from having the dreadfully frightening really vivid dreams that happen every night. Google tells me these are likely a symptom of neuro-degeneration. All I know is that I wake up each morning in a state of terror.
It's not an easy ride.
 

WJG

Registered User
Sep 13, 2020
112
0
Another session with the psychologists and I come away with the idea of trying to storyboard my day - seeing of using visual imagery will help me. They still seem puzzled by my results...it seems that they don't fit any clear pattern.
I face problems trying to explain this to others. A friend flatly denies that I have any memory problems...and I find it hard to know how to respond. Then in the evening talk turns to why I have problems with motivation. People want me to seek talking therapy, or get out into the fresh air. I realise that they see my condition more as mental illness than as neuro degeneration - and again, I'm not sure how to respond. 'It must me your medication' someone ( with extensive mental health experience) says 'Well that's not what the neurologist thinks' I reply. I'm not sure whether to go into the fact that frontal atrophy is probably the cause. I'm none too sure quite how much my friends understand about the mechanisms of neuro- degeneration and how these can affect behaviour. I guess that I've assumed that they do know ....and I think that perhaps they don't.
Realise that I'm feeling lonely and really rather frightened about the future. In the meantime have had appointments through for an MRI scan, lumbar puncture, and further appointment with Neurologist.
I have the occasional nightmare and I know how shaken they leave me feeling, especially while I’m still half asleep. I do feel for you @WJG
Thanks
 

WJG

Registered User
Sep 13, 2020
112
0
Yesterday was a day of contrasts. On one hand I had a reply to a complaint I had made regarding an English health care trust where I used to live. They consider that they they didn't misdiagnose me (they completely missed any signs of neuro degeneration, and pegged me as having a personality disorder) and defend never sending me for a brain scan.

On the other I had an MRI brain scan - which is now the third different type of scan in six months that's been commissioned by the Scots trust where I now live.
The English trust say that there is a fundamentally different way of diagnosing neuro-degenerative diseases between England and Scotland - which sounds mighty strange to me.

There's been a stark contrast in my treatment between the two trusts., and their respective older age psychiatrists. The English one seemed dismissive of any notion of neuro degeneration. The Scots one has put into place an extensive (and therefore expensive) diagnostic procedure.

Anyway, the MRI scan was an unusual experience. I was flat on my back, wearing a surgical gown, with head clamped in place by foam padding in a plastic cradle. Then wheeled into a confined tube in which for 20 minutes or so the magnets get to work. Each time you think you've heard the weirdest sound an even stranger one comes along.

It was like being stuck inside a dysfunctional techno playing juke box. Certainly not for the claustrophobic!

This afternoon I return to the psychologists. They tell me that my verbal memory is fading, but my visual memory is intact. I've been experimenting with a phone app that means I can colour code diary appointments and make them flash. And I've also tried adding emojis.

What I really want is a diary app that uses pictures and/or words - but I can't find one. Nor a conventional paper diary along the same lines. I find myself wondering if there's scope for tailoring apps to individuals, such that the way information is conveyed could change according to what's known about their neurological profile.
 
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WJG

Registered User
Sep 13, 2020
112
0
So this afternoon I went to have my eyes examined. I have been experiencing a blind spot in my left eye. And have had brief moments of losing my vision in this eye. A local optometrist took a retinal photo of this and showed me that there was a fluid build up.....but it turns out that things aren't that simple.

At the eye hospital I had a full retinal scan, that shows 'slices' of the eye, followed by a Doctor looking through a microscope. Lo and behold - no sign of anything actually being wrong with my eye at all. ' I see you're going to the Memory Clinic' the Dr says, before explaining that the grey squiggle I can see is actually being generated within my brain, rather than within my eye. And suggesting that the optometrist's camera must have had a dirty lens.

Great. I'm seeing things that aren't actually there. Not sure the DVLA are going to be too happy about this.
 

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