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Inaccurate rubbish

TrixieB

Registered User
Jul 2, 2015
20
I had the following posted on my fb page today - twice! Wildly inaccurate and deeply upsetting but I can't find the primary source. I've asked the 'posters' to delete it before it upsets anyone else. Dealing with dementia is difficult enough without having to read rubbish like this.
'Firstly there is a difference between Alzheimer's and vascular dementia- Alzheimer's patients can have medication that helps their cognitive state where as vascular dementia patients have a death sentence. They progress backwards to the point where they can't look after themselves and are in a newborn state. But unlike a newborn they lose the ability to swallow. Then the choice must be made as to provide a feeding tube or not.
Imprisonment in one's own rapidly shrinking brain is how a doctor described it to me. I wouldn't wish Dementia/Alzheimer's on my worst enemy. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are. Patients can eventually become bedridden, unable to move & unable to eat or drink. There will be people who will scroll by this message because Dementia/Alzheimer's has not touched them. They may not know what it's like to have a loved one who has led a battle against Dementia/Alzheimer's. For all the people I know, I ask a small favor.If you know someone who has battled with Dementia/Alzheimer's or is still struggling, please add this to your status for one hour. Copy & Paste to support victims & families affected by this cruel illness as there is no cure and there are no survivors! Hold your finger on the message to copy it, then paste it on your page. No tagging or sharing. Do this on behalf of all caregivers who love or care for someone with this disease.'
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,659
Kent
Inappropriate posts on FB can be reported to the administration. They can also be hidden from view if a reminder on a timeline is upsetting.

I have to say the person who posted this on FB seems very distressed. They may be confused about information they have received or read, and they won`t be on their own. There is a lot of confusion around as well as anger and distress so I wouldn`t be too down on them.
 

stanleypj

Registered User
Dec 8, 2011
10,707
North West
I agree with the others that the person who posted this is probably trying to cope with an awful situation and is at their wit's end.
 

CynthsDaugh

Registered User
May 5, 2015
139
Salford, Lancashire
This has actually been copy/paste posted by my Facebook friends a couple of times, first time about 3-4 months ago so this is doing 'the rounds'. The first time I saw it I was taken aback and decided to ignore it as it completely doesn't correspond with my thoughts or feelings. The second time I got slightly angry.
 

Beate

Registered User
May 21, 2014
11,896
London
Everyone is different so it doesn't necessary correspond with your reality but for someone it is and we should respect that as well. A lot of people here think that the picture the media paints is too rosy and therefore inaccurate. Some live well with dementia. Some don't. Their feelings aren't rubbish, they are in despair.
 

jochrisbryan

Registered User
Jun 10, 2008
21
Its almost a copy of the depression post, the cancer post, the fibromyalgia post, the autism post etc etc. They are spam, sometimes shared as people have somebody or know somebody with a disease/condition, but I find them unhelpful, scary if somebody is just meeting with the beast that is Dementia/Cancer etc for the first time. For some though who are going through any illnes they could help. :confused:
FB will not remove as none of it contravenes their policy.
 

Aisling

Registered User
Dec 5, 2015
1,806
Ireland
I had the following posted on my fb page today - twice! Wildly inaccurate and deeply upsetting but I can't find the primary source. I've asked the 'posters' to delete it before it upsets anyone else. Dealing with dementia is difficult enough without having to read rubbish like this.
'Firstly there is a difference between Alzheimer's and vascular dementia- Alzheimer's patients can have medication that helps their cognitive state where as vascular dementia patients have a death sentence. They progress backwards to the point where they can't look after themselves and are in a newborn state. But unlike a newborn they lose the ability to swallow. Then the choice must be made as to provide a feeding tube or not.
Imprisonment in one's own rapidly shrinking brain is how a doctor described it to me. I wouldn't wish Dementia/Alzheimer's on my worst enemy. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are. Patients can eventually become bedridden, unable to move & unable to eat or drink. There will be people who will scroll by this message because Dementia/Alzheimer's has not touched them. They may not know what it's like to have a loved one who has led a battle against Dementia/Alzheimer's. For all the people I know, I ask a small favor.If you know someone who has battled with Dementia/Alzheimer's or is still struggling, please add this to your status for one hour. Copy & Paste to support victims & families affected by this cruel illness as there is no cure and there are no survivors! Hold your finger on the message to copy it, then paste it on your page. No tagging or sharing. Do this on behalf of all caregivers who love or care for someone with this disease.'

I can't find what was posted Trixie but so sorry that you have been hurt so much

Aisling
 

Aisling

Registered User
Dec 5, 2015
1,806
Ireland
Inappropriate posts on FB can be reported to the administration. They can also be hidden from view if a reminder on a timeline is upsetting.

I have to say the person who posted this on FB seems very distressed. They may be confused about information they have received or read, and they won`t be on their own. There is a lot of confusion around as well as anger and distress so I wouldn`t be too down on them.

Sorry, what does FB mean? Forum board ?

Aisling
 

Margarita

Registered User
Feb 17, 2006
10,824
london
The Emmerdale Story line

Gosh now its still going around.
Its now added
The Emmerdale Story line .





After the Emmerdale storyline Firstly there is a difference between Alzheimer's and vascular dementia- Alzheimer's patients can have medication that helps their cognitive state where as vascular dementia patients have a death sentence. They progress backwards to the point where they can't look after themselves and are in a newborn state. But unlike a newborn they lose the ability to swallow. Then the choice must be made as to provide a feeding tube or not.
Imprisonment in one's own rapidly shrinking brain is how a doctor described it to me. I wouldn't wish Dementia/Alzheimer's on my worst enemy. As the patient's brain slowly dies, they change physically and eventually forget who their loved ones are. Patients can eventually become bedridden, unable to move & unable to eat or drink. There will be people who will scroll by this message because Dementia/Alzheimer's has not touched them. They may not know what it's like to have a loved one who has led a battle against Dementia/Alzheimer's. For all the people I know, I ask a small favour. If you know someone who has battled with Dementia/Alzheimer's or is still struggling, please add this to your status for one hour. Copy & Paste to support victims & families affected by this cruel illness as there is no cure and there are no survivors Hold your finger on the message to copy it, then paste it on your page. No tagging or sharing . Do this on behalf of all caregivers who love or care for someone with this disease ❤❤ xxx..../QUOTE]


I did replay with I have not been following the Emmerdale story line, but when my mother was diagnosed with Alzheimer's in Gibraltar she was given Ebixa (memantine): drug treatment for Alzheimer’s disease. Then in UK I was told mum symptoms where more of vascular dementia. But I made sure my mother was keep on Ebixa medication . As her symptoms where much better with this mediation. Alzheimers is just an "unberlla term" . Some dementia leads up to Alzheimers Symptoms at the end of life stage ./QUOTE]


It has left me wondering do they not offer mediation Ebixa (memantine): drug treatment for Alzheimer’s disease to people with vascular dementia ?

Also left me wondering how the Emmerdale story line is betraying vascular dementia, also with mediation ?

I did not know I still had the passion in me to still want people with vascular dementia or AZ to get medication like Exbixa .
Hi to all of you who remember me :)
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
Ah thank you. I don't use it.
Aisling xx
Me neither, when you read some of the stuff that goes on there I don't think I ever will.
No doubt it has its uses but each time I read about another child killing themselves because they're bullied on there or ignorant comments like the ones Trixie has received it just makes me less willing to sign up on there.
Beate makes a valid point it could be someone out there suffering in there own particular hell and just kicking out in their despair but we'll never know.
K
 

Lawson58

Registered User
Aug 1, 2014
2,073
Victoria, Australia
I always refer to FB and Twitter and all the others as antisocial media. There may be some good things about it but I think the abuses outweigh the uses.

And it disturbs me that many people never query the validity of what they are reading on these sites and accept what is said as gospel. I know OH likes Facebook but he believes some of the rubbish that is posted which has distressed him at times.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I have to say that, in all fairness, I cannot see what is wildly inaccurate about the FB post. It's certainly a very harsh description of the disease but I'm sure for many people it is the reality. I have read similar on TP when someone is very distressed about a relative's suffering - as seems likely here. Of course not everyone will suffer in the same way.

Margaritas, Alzheimer's is not the umbrella term, that is dementia, of which there are a number of causes including Alzheimer's and Vascular. My husband had the latter and no, there is no medication for it but, because the consultant thought he might have some Alzheimer's as well, he did have Aricept(Donapezil) for a short time. Sympoms for both can be similar not just when nearing the end but all forms of dementia can vary from one person to another of course.

I have to say that I sometimes receive 'Don't share, copy and post' FB messages but always ignore them.

Oops, ony just noticed that the original post is 9 months old!
 
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