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Professionals here to help?

NotTooLate

Registered User
Jun 10, 2017
187
Alvechurch
toolate.blog
I often want to get an answer to a question and only get confusing, conflicting, or replies in a language that makes no sense to me... medical jargon etc!

As AS supports and funds research, I was wondering if these researchers share this online space and would they be up for answering questions?

Such as:

Can Amyloid Plaques been seen on a scan, or is it only the dark space that shows where there are no live brain cells for the scan to detect?

The reason I'm asking this question;
A system used in scanning, now compares scans to scans of know dementia patients. These patients were known to have Amyloid Plaques in the brain, in those dark spaces. The inference is then, if the your scan, is like the controlled scan... you have Amyloid Plaques. Only after death can this be truly determined.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,717
Kent
As AS supports and funds research, I was wondering if these researchers share this online space and would they be up for answering questions?
Professional are not encouraged to offer advice here @Richard and Fin unless there is a designated Q&A session.

There is no way the qualifications or authenticity of professionals can be checked and the forum could be made open to abuse.

There are regular Q&A sessions here though and perhaps your particular issues could be addressed to the Alzheimer`s Society`s representatives who man the sessions.

It might be tricky though because as we all know everyone's situation is different and without knowing a person`s full medical history general advice may not be appropriate.
 

NotTooLate

Registered User
Jun 10, 2017
187
Alvechurch
toolate.blog
I'm not seeking advice...

Abuse!? What!

I am not asking for individual diagnosis or help... these are generalised questions related to research! Is this a secret?

I was hoping that a researcher may be in a better position to offer an explanation and clarify certain things!?

Who do you turn to when you need an explanation, or answers? The GP and his 10minute slot?

I'm looking for answers that help us all!
 

Jaded'n'faded

Registered User
Jan 23, 2019
664
High Peak
I'm with Richard on this one. Whilst - obviously - we can't have people on here giving 'professional' advice willy-nilly without checking their credentials, it would be SO useful to have 'guest' experts from time to time.

I know the Alzheimer's Society regularly have Q & A sessions, but I'd love to have the option to ask medical questions and that's something I haven't seen much of in the years I've been here.

As Richard says, it would not be possible to give advice relating to individuals, but I'm sure many of us have general questions we'd like answers to. A Q & A session on scans would be good - explaining the different types and what they may/may not show, a guide to the medical terminology used, etc.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,811
Yorkshire
hi @Richard and Fin
sometimes when I want some specific information, I pop over to the main AS site and do a search there
https://www.alzheimers.org.uk
the search button is at top right of the page under the green Donate now button

eg I simply entered the word scans .... and these are the results, though I don't know if any of these will answer your question
https://www.alzheimers.org.uk/search?keywords=scans&Search=

maybe even contact the Society directly ?
https://www.alzheimers.org.uk/about-us/contact-us
 

HarrietD

Administrator
Staff member
Apr 29, 2014
5,373
London
Thanks @Richard and Fin and everyone who’s commented on this thread so far.

Just to clarify, the purpose of our Q&As is for people either from Alzheimer's Society or from organisations with a connection to dementia to offer their expertise on different topics. We have asked for ideas of topics for Q&A in the past and are always happy to hear from Dementia Talking Point members with ideas.

Whilst we can’t have direct medical advice shared on the community, if you'd be interested in a Q&A on a medical topic please let us know who you'd be interested in hearing from and the types of questions you'd like to ask. You can email us at talkingpoint@alzheimers.org.uk or comment below.
 

Jaded'n'faded

Registered User
Jan 23, 2019
664
High Peak
I think there's a big difference between medical advice and medical information. So, for example, whilst it wouldn't be OK to ask this:
'My mother has small vessel disease, does this means she has dementia or will get it in the future?'

... it should be OK to ask this:
'What is small vessel disease and how does it relate to dementia?'
 

NotTooLate

Registered User
Jun 10, 2017
187
Alvechurch
toolate.blog
Good afternoon everyone and thank you for taking the time to reply!

1. I have viewed the article Nitram gave a link to. Thanks for that!

This is an American site, nothing wrong with that, but we do you use the same scan technology in this country.
I've emailed the person responsible for this particular area and asked if they can give clarification on what these scans show. I will let you know when I hear anything.

The reason I have emailed: In the article it states that the Amyloid Plaques are, 'visualised' by the scan. This seems to suggest that they are not actually visible themselves.

2. I like the idea of Q&As... sounds sensible, but I bet you don't get many request? I don't see any past Q&As sessions for me to check out?

Can the Q&As be on general topics, of mixed interest? So, If anyone had a question and I added that to my question and any others that hopefully would be added here, I could then send them as a Q&A request to talkingpoint@alzheimers.org.uk?

3. GrannieG... believe me when I say... No offence taken! I do have a tendency to go on a bit! I suppose I put this down to my, sense of urgency! I don't have time to wait, or waste! Sorry if I was abrupt!

4. Jaded'n'faded... spot on!


I have just got the answer: Regarding PET Scans and seeing the Amyloid Plaques.

This particular scan requires you to have a molecule solution injection. The molecules in the solution are taken to the brain, via the blood and they then attach themselves to the any abnormal protein. These abnormal, damaged proteins are the Amyloid Beta Plaques I was referring to. Each molecule has a radioactive marker in it and this shows up on the scan.

Answer: This particular scan does show the Amyloid Plaques in the brain.

I have added a link that was given and shows the procedure and a doctor explaining clearly. I believe this video is on the AS site too....



5. Hi Shedrech... never thought of looking at the main site... I will now! Many thanks!
 

nitram

Registered User
Apr 6, 2011
19,937
North Manchester
@Richard and Fin

In case you don't already know scan types with an E in them eg PET, SPECT , ... work on a different method to other scans such as CT and MRI which basically are imaging scans.

The E stands for emission. A radioactive material, chosen to migrate to a specific body tissue is injected and the resulting emission detected, the T always stands for tomography the combining of several results to form a 3D image.

To further complicate matters hybrid scans such as PET/CT are being developed
 

NotTooLate

Registered User
Jun 10, 2017
187
Alvechurch
toolate.blog
That makes this scan thing a whole lot clearer! Cheers Nitram!

Just image, one day you'll be able to step into a booth, at the supermarket, and get a scan that will do everything! You have Piles! and 45 Bonus Points! Happy Shopping... :D
 

Lawson58

Registered User
Aug 1, 2014
2,080
Victoria, Australia
That makes this scan thing a whole lot clearer! Cheers Nitram!

Just image, one day you'll be able to step into a booth, at the supermarket, and get a scan that will do everything! You have Piles! and 45 Bonus Points! Happy Shopping... :D
My husband was offered a PET scan while he was going through the process of getting a diagnosis but it was not available on our public health system. It was extraordinarily expensive at the time and after discussing it with his geriatrician and taking into account my husband's violent objections to further testing, we didn't go ahead with it.

I don't know that having it done would have made any difference to our outcome but I suspect not.
 

NotTooLate

Registered User
Jun 10, 2017
187
Alvechurch
toolate.blog
Hi Lawson58...

I still find this Username thing strange to get on with..... sounds like I'm taking to some inanimate object, or some non-human entity!:confused:

Anyway... a big hello and that's for the reply!

I'm in sunny UK and don't think I have every had a PET scan... although I have had a few different scans... the machines were different, but I can not remember having any injection before having the scans?

Money is the thing... it's is God in today's World.. If you got it! I never understand why our government doesn't pile money into it's own research programs and produce cost effective results for all... I'm not really up on politics... but if a private company can produce a product and make a massive profit, then why can't a Nationalised company, be run like a private company, but with the profits being returned to the company to continue the work and ensure it's future development!?

I do understand your husband's reluctance to continue being tested! I spent a long time jumping through hoops, doing this, doing that and when enough boxes were filled in they gave me that amazing news... 'You have dementia! and then even more fantastic news, 'We can not do a thing about it!'

Every few months I have to go back... to be asked, 'And how are feeling in yourself?' I just know this is the same sentence churned out to everyone of us.... F*_^@(! .....Great... I don't say the first bit, just think it! :confused: They then talk to my son and daughter as if I don't exist, and being in a wheelchair is a double whammy, and then they let me out.

I did have a phsyco Nurse coming to see me at first, but when she did arrive, always late; something that really gets me on edge, she would be sitting there, looking around, nodding...'yea, yea' um.... and all the time forever picking up her phone and texting away... 'Sorry about that!.. was her mantra... She doesn't come anymore! :)

Enough of me going on... this is the only place I can speak, I do hope you are well and afraid to ask about hubby, but I still wish him well, wherever he may be!
 

Lawson58

Registered User
Aug 1, 2014
2,080
Victoria, Australia
Hi Lawson58...

I still find this Username thing strange to get on with..... sounds like I'm taking to some inanimate object, or some non-human entity!:confused:

Anyway... a big hello and that's for the reply!

I'm in sunny UK and don't think I have every had a PET scan... although I have had a few different scans... the machines were different, but I can not remember having any injection before having the scans?

Money is the thing... it's is God in today's World.. If you got it! I never understand why our government doesn't pile money into it's own research programs and produce cost effective results for all... I'm not really up on politics... but if a private company can produce a product and make a massive profit, then why can't a Nationalised company, be run like a private company, but with the profits being returned to the company to continue the work and ensure it's future development!?

I do understand your husband's reluctance to continue being tested! I spent a long time jumping through hoops, doing this, doing that and when enough boxes were filled in they gave me that amazing news... 'You have dementia! and then even more fantastic news, 'We can not do a thing about it!'

Every few months I have to go back... to be asked, 'And how are feeling in yourself?' I just know this is the same sentence churned out to everyone of us.... F*_^@(! .....Great... I don't say the first bit, just think it! :confused: They then talk to my son and daughter as if I don't exist, and being in a wheelchair is a double whammy, and then they let me out.

I did have a phsyco Nurse coming to see me at first, but when she did arrive, always late; something that really gets me on edge, she would be sitting there, looking around, nodding...'yea, yea' um.... and all the time forever picking up her phone and texting away... 'Sorry about that!.. was her mantra... She doesn't come anymore! :)

Enough of me going on... this is the only place I can speak, I do hope you are well and afraid to ask about hubby, but I still wish him well, wherever he may be!
Thank you for asking about my husband. I felt quite sorry for him by the time he was diagnosed. He had started some of the testing for Alzheimer's which is a rather slow process when he had a cardiac arrest. That was in December 2013 and in April 2014 he had prostate surgery requiring catheterisation for a few weeks. So by the time we got back to the doctor for his diagnosis, he really didn't want anything more, especially if it wasn't going to achieve anything much. He had some more intensive testing last year and has refused to do any more.

And when someone asks him how is feeling, he always replies that he is fine even when he is having a lousy day.

I agree with you about the lack of money being invested in research but pharmaceutical companies will tell you that many of their projects cost buckets and turn out to be of no value. However, I have yet to work out why a particular drug can cost heaps more in wealthy countries than poor and I don't believe that pharmaceutical companies are being altruistic and are doing it out of the goodness of their hearts.

Talking Point is the perfect place to have a rant. It always helps to write things down to help put things in their place so feel free to rant on.
I
 

NotTooLate

Registered User
Jun 10, 2017
187
Alvechurch
toolate.blog
Altruistic and Pharmaceutical Companies... just don't seem to together somehow!

I never understand that selling a few of something that cost a lot... only benefit the few and those that can afford it... rather than selling more at a lower price and benefitting all that need it! I'm sure they would make just as much!?

You can see why I'm not in business! :rolleyes:

You can't beat a good rant... I do it to myself, or Finn, my dog, all the time... when I'm on my own.... Does me the World of good! :)