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Welcome to the D Club

WJG

Registered User
Sep 13, 2020
103
0
So yesterday I became a new member of the Club, the club that nobody wants to join. The club which is joked about and mocked, the club which has a few illustrious former members, and thousands that no one has ever heard of.

Over a year ago I realised that something was wrong. That somehow something in my brain had changed and was changing. At the time I was in a psychiatric hospital following a depressive episode and the Consltant Psychiatrist had concluded that I had a personality disorder. A psychologist gave me a cognitive test which I aced - and despite my requests for further investigation the psychiatrist told me that as I performed well cognitively there was no possibility of me having dementia of any kind.

I have since moved to Edinburgh where my new mental health team seemed to listen more. First I was given a CT scan which showed a moderate degree of atrophy: membership of the club was looming. As a result of this I was sent off for a SPECT scan, to further investigate the highways and byways of my brain.
Yeserday I was told what this had found - that there is damage within both my parietal lobes, consistent with the early stages of dementia. Membership confirmed.

Next I will have neuropsychological tests to try and determine my category of membership. Apparently it might be the big A, although I have no memory loss. And it isn't clear whether I qualify for full membership or the beginner's special offer. Nor can anyone tell me how progressive my condition is.

I am 67, so I'm a Junior Member. Looking back, I suspect that this think has been gestating for decades. I've long had problems with dealing with planning and organisation in my life, although I was in a high powered job as a radio journalist: but my home life was chaotic. Sometimes this would give me problems at work - although generally I found ways around this. During the past year though I've suffered more and more from a lack of empathy, and increased apathy. I have problems with my perception of time, and I seem to have lost interest in my abiding passion for drawing.

I might be one of the first people to welcome my new membership. Finally I have some objective evidence that yes, I do have a disease that is influencing my behaviour. Yes, there are reasons over above and beyond my control. Some of my friends though are struggling, and are denying me my rights to membership which I find interesting. Suddenly they are experts on dementia, busy telling me about the brain's elasticity and how I can learn to cope.

I have a great sense of relief that my thoughts have been vindicated. It's not nice realising that neurons have died, never to be replaced. But I feel that I've known this for months. It's not nice thinking that I will deteriorate further - but at least I now know why. Yesterday afternoon I took part in an online interview with a dementia researcher. He was delighted to hear from someone who had literally just been a member of the D Club for a few hours. It's time to give something back.
 

MartinWL

Registered User
Jun 12, 2020
721
0
Your dry humour made me smile. Clearly you have not lost the sense of humour neurons. We shall enjoy your witty postings here. Hope the journey goes well for you.
 

lemonbalm

Registered User
May 21, 2018
1,385
0
I like your attitude and hope that you find lots of useful information and support here along the way.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,806
0
Hi @WJG, glad to hear you are being as positive as you can be about things. I think being pro-active and doing things such as being involved in research sounds very sensible. I'd also make sure that legal stuff, such as wills and Lasting Power of Attorney is all in order, so when you do need a bit more help it'll be much easier for that to be put in place.
Fingers crossed that is still quite a way in the future, so in the meantime enjoy doing all the things that you usually do.
 

WJG

Registered User
Sep 13, 2020
103
0
I now have some further details of the SPECT scan - which apparently shows 'bilateral parietal hypo perfusion' ( I take this to mean there's damage in both parietal lobes) and a tentative diagnosis of early signs of Alzheimer's.
I'm due some neuropsychological tests next week. Spent an hour on the phone with a psychologist basically telling her things I've already gone over several times with other people. Can't really understand why the system is so blooming disjointed.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
How do you feel about the SPECT results? Is it what you expected? Often a 'tentative diagnosis' is the best people get - it's hard to 'prove' dementia. It sounds like the further tests you'll be having may tie things down a bit, may suggest a particular type of dementia but don't be surprised or disappointed if the tests are inconclusive.

Where there is doubt, there often seems to be an unspoken comment of 'time will tell'... And that is certainly true, though not in the least helpful to you I'm afraid.

Have you been prescribed any 'slow down' drugs? Please keep posting and let us know what happens next - I really hope you get all the help you need. (And I admire your strength and determination!)
 

Pepp3r

Registered User
May 22, 2020
74
0
Hi @WJG , if I end up following my dear lovely mums footsteps then I hope it's with a bit of the strength and attitude you are showing here, please keep posting and take care.
 

WJG

Registered User
Sep 13, 2020
103
0
How do you feel about the SPECT results? Is it what you expected? Often a 'tentative diagnosis' is the best people get - it's hard to 'prove' dementia. It sounds like the further tests you'll be having may tie things down a bit, may suggest a particular type of dementia but don't be surprised or disappointed if the tests are inconclusive.

Where there is doubt, there often seems to be an unspoken comment of 'time will tell'... And that is certainly true, though not in the least helpful to you I'm afraid.

Have you been prescribed any 'slow down' drugs? Please keep posting and let us know what happens next - I really hope you get all the help you need. (And I admire your strength and determination!)
The SPECT result was not what I was expecting at all. I had previously been told that the CT scan showed more frontal atrophy - but the psychiatrist asked for this to be reviewed, and the radiologist then said actually it showed parietal atrophy. Don't understand how that can be....
I expected frontal atrophy - especially as I have problems with motivation - was surprised by SPECT result. I want to get hold of the actual scans. When I've mentioned this so far there have been sharp intakes of breath - but I don't see why I shouldn't have access to details of my own brain. I foresee scan images becoming more of a 'currency' in individual treatments.
 

WJG

Registered User
Sep 13, 2020
103
0
Latest news - today I get two letters: one confirming appointment that I know about for neuropsychological tests. Letter says to let them know if I can't make it - but doesn't have a phone number or an email address. After all, you wouldn't want to make things too easy, would you?

The other letter is from a specialist clinic inviting me to a cognition appointment. This one I know nothing about at all. Letter includes a photocopy of a leaflet - with pages in the wrong order and upside down. Can't decide if this is a test or an allegory.

It's lovely to suddenly get lots of attention, but I'm mightily confused - are these two appointments basically the same thing or do they differ in some fundamental way from each other?

I've told the psychologist that I spoke to on the phone that my memory seems fine. Then I found an online test (a pukka one backed by a US Uni)....result was 20% compared to 80% norm for my age. Hmmm.....
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
It's an allegory - a veiled warning that most things in the diagnostic process are either upside down or in the wrong order... or just plain wrong! Glad your sense of humour is unaffected... :D

Keep us posted...
 

WJG

Registered User
Sep 13, 2020
103
0
So yesterday I had my first neuropsychological tests. Everything from defining words to 'who is the Prime Minister'? I found some tests easy - others really difficult: especially assembling coloured blocks to resemble a pattern. What struck me above all is how low tech it was, with the psychologist laboriously writing down answers for her to score later. I guess I had assumed that these days things would be done using an iPad or PC. Didn't seem like an efficient use of staff time at all. Felt remarkably tired afterwards.
One test was asking what linked two words - it was easy to tell the link between dog and bear, but I struggled with shadow and echo. There's a kind of similarity but it's extraordinarily hard to explain!
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
Don't forget, the person conducting the tests isn't just writing down your answers, they are observing you and your behaviour/reactions too. This is an important part of the assessment. They need to know how you approach the test, see what you do when you find a question difficult, observe changes in your behaviour/demeanor, note how tired you get as the test progresses, etc. So an i-Pad wouldn't help much with that.

I agree the shadow/echo question is difficult! I can see the link but as you say, it's actually quite hard to explain. Of course, you could have replied that they both end with an 'o' sound...! (I wonder if you get points for being a smart***?)

Did they tell you what your results were and/or any interpretation?
 

angelict

Registered User
Jan 16, 2020
153
0
Just read back on your post why can't you get the results from the dept have you contacted pals or put in a sar to get said record. Not easy for you but if services are going to be unhelpful then it's frustrating for you take care of yourself😉
 

WJG

Registered User
Sep 13, 2020
103
0
To be clear, I have another battery of tests next week and expect results the week after. I have been asked if I want to be told if the results suggest dementia. Of course I do - that's the whole blooming point.
 

WJG

Registered User
Sep 13, 2020
103
0
I've been thinking about the diagnostic process. I don't really understand why scans are apparently paid so little attention to. I naively imagined that my SPECT scan would lead directly to a diagnosis. Surely we must have enough data for an AI programme to compare any individual scans against norms for people with and without neuro degeneration - and thereby suggest particular form of disease?
It seems that currently scans play second fiddle to somewhat subjective tests.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
The trouble is, scans can show changes in the brain of a person with no dementia symptoms whatsoever, whereas some people with major symptoms have inconclusive scans.

So you're right - often the scans are secondary to testing/observation. My mum only had a scan because she fell and hit her head. There was no bleed on the brain (at that point) but mum had really major changes in her behaviour/cognition. It's possible she had a TIA that caused the fall or that the fall caused a TIA - we will never know. But the scan showed nothing - it certainly didn't give her a diagnosis. (Mum never went to the doc so had been completely under the radar for years before her fall. I'd known for a long time that she had dementia but everyone else - and mum - was in denial!) A few weeks later I had a big row with her arrogant consultant (who said there was nothing wrong with her) and demanded another scan as she was getting worse. He reluctantly authorised it and mum was found to have a chronic sub-dural haematoma. They scanned again a few days later and it was bigger so the consultant got worried and moved her to another hospital where they had a proper neuro dept. They wanted to do a drain but I refused and she was given cortico steroids instead.

Long story short... I moved her to a CH. As she needed a DoLS to stop her escaping but had no diagnosis, she was granted a temporary one, booked for a follow-up scan and referred to another consultant - memory clinic I think. He visited her briefly at the CH and spoke to me at length on the phone. His original diagnosis from the scans and visit was Vascular dementia but after talking to me he changed that to mixed - Alz + vascular. But he told me the scans only showed some small vessel disease consistent with age and were not very helpful, though it was very clear she had dementia. (Her CSDH had mostly resolved by then - this was about 8 months after the fall.)

The point of this sorry tale is that mum's scans gave them useful info about the haematoma but didn't really help the dementia diagnosis.
 

WJG

Registered User
Sep 13, 2020
103
0
The trouble is, scans can show changes in the brain of a person with no dementia symptoms whatsoever, whereas some people with major symptoms have inconclusive scans.

So you're right - often the scans are secondary to testing/observation. My mum only had a scan because she fell and hit her head. There was no bleed on the brain (at that point) but mum had really major changes in her behaviour/cognition. It's possible she had a TIA that caused the fall or that the fall caused a TIA - we will never know. But the scan showed nothing - it certainly didn't give her a diagnosis. (Mum never went to the doc so had been completely under the radar for years before her fall. I'd known for a long time that she had dementia but everyone else - and mum - was in denial!) A few weeks later I had a big row with her arrogant consultant (who said there was nothing wrong with her) and demanded another scan as she was getting worse. He reluctantly authorised it and mum was found to have a chronic sub-dural haematoma. They scanned again a few days later and it was bigger so the consultant got worried and moved her to another hospital where they had a proper neuro dept. They wanted to do a drain but I refused and she was given cortico steroids instead.

Long story short... I moved her to a CH. As she needed a DoLS to stop her escaping but had no diagnosis, she was granted a temporary one, booked for a follow-up scan and referred to another consultant - memory clinic I think. He visited her briefly at the CH and spoke to me at length on the phone. His original diagnosis from the scans and visit was Vascular dementia but after talking to me he changed that to mixed - Alz + vascular. But he told me the scans only showed some small vessel disease consistent with age and were not very helpful, though it was very clear she had dementia. (Her CSDH had mostly resolved by then - this was about 8 months after the fall.)

The point of this sorry tale is that mum's scans gave them useful info about the haematoma but didn't really help the dementia diagnosis.
That's really interesting - Thankyou. So it seems that scans can be an aid to diagnosis rather than that they can diagnose from a scan. I still wonder if there might be more information on a brain SPECT scan than is usually retrieved by the radiologist who has to sort through scans of all parts of the body. My suspicion is that he or she looks at induvidual scans and notes (as in my case) 'bilateral perietal hypo perfusion' without looking for any further detail - but this might not be how it's done at all!
 

WJG

Registered User
Sep 13, 2020
103
0
In the continuing tale of just exactly how many hoops do I have to jump through I've just had a talk with my CPN who tells me that the appointment at the Anne Rowling Clinic ( Thankyou Harry Potter readers for enabling JK Rowling to found this with a £10m donation) will build on the neuropsychological tests. I feel like I constantly expect to be given a firm diagnosis after the next test or scan - only yo be told that there's another one just around the corner.
It's good that the NHS is going to a lot of time and trouble to get it right - but it's taking its time. I guess if I quite obviously didn't know who the Prime Minister was or what the time of day was things might be simpler and clearer.
We have a lot to thank the NHS for. I was reading about just how difficult it is to get a SPECT scan in the States - as insurers think they're too expensive.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
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!