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Old 27-08-17, 07:56 AM   #21
jacqueline
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Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
Does DataProtection come into this at all...as in I frankly don't like the idea of all the posts I did when I was at my lowest now being transferred across to some mammoth A-Z search engine new site. No one's asked my permission....no one even posted on here saying what do you think of these plans....just bam we're closing down, moving, if you don't like it tough. Like Crystal HU ain't for me. A perfect example of how not to go about things.....
Hi Shiraz,
I have already had my past posts deleted because like you say above they was made when I was so very low and things happened so fast and serious that now I don't want people I have never met and don't even know their real names to have access to them. And furthermore I definitely don't want some massive HU to look at them either. So they are gone. Well hopefully anyway.
But who knows what is available from cyber space when someone can make the NHS come to a standstill by hackers.

I am so happy that veteran message board users are challenging the moderator statement "we are making this change based on feedback from current message board user's..".
I think that statement is a definite porky pie to make an excuse for the changeover they are making " just because they can" and we off this message board and troubles we have once again mean nothing to the HDA head office.

PS again. I don't even know how my posts are now 768 when I specifically asked for ALL my past post to be removed. How is that Bill when I asked you to remove ALL my past posts.
PLUS!!!! if the HDA Facebook site was more open and above board people off here may use that too.
And on second thoughts WHY could their official Facebook site not be changed so that we could have some kind of group message board on that. OTHER groups on facebook seem to work. So why not make an HDA one.
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Old 27-08-17, 11:22 AM   #22
Allan
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Default Message Board stuff ...

.
I wrote the gist of this on Friday night but didn’t post it because the HDA is a 9-5 Monday - Friday organisation and it’s Bank Holiday weekend - so I wouldn’t get a response from HQ even if there was great urgency. The only response would be from this Message Board community.

There’s recent history re “fight the good fight” or "fight and flight" activity. First there was the failed HD APPG, then the HD saga in Casualty, then the Pope + HD … all gone awry or down the plughole.

This Message Board has always been a “raw and sensitive comfort” with its strength and commitment to getting awkward questions answered from an informed background, with a wealth of comprehensive and positively, uplifting responses in a feeling of family togetherness - allowing the extreme emotion of its members to flood this MB - whether it be with their long rants or short “predictive” requests.

Through the courage of HD+ individuals who reveal their personal situations here we have a rare insight into the range of ways in which this dreadful disease can manifest itself - but also how those same individuals courageously manage their own, sometimes, unique routines.

I really think the HDA should have done more for the benefit of the Message Board members than just having canvassed a few attendees at the 2016 AGM. The following is taken from the HDA magazine December 27, 2016:

I would like to extend a special thanks to those who attended our website feedback workshops during the weekend. Our website is an integral part of how we share information about HD and our services and we want to make sure it meets your needs. It was great to gain your views on how our website can be improved from a user’s point of view. As always we welcome your feedback about the look and content of our materials … CHIEF EXECUTIVE

It’s my firm opinion that this MB forum, with its categories, themes and threads can only successfully exist within the HDA website - such is the case with the excellent Alzheimer’s and Parkinson’s forums.

There are also wider implications to consider. Does this new HD forum intend to run with the title that it currently has on HU - Huntington's Disease Community?

I certainly hope not as it will be quickly overridden by global users who, in the main, have totally different Medical and Social Service systems from the UK in their own countries. It could easily become as fractious, fragmented and unhelpful as the Huntington’s Disease UK and Huntington’s Disease Support Group Facebook groups - where there is no organisation or follow through whatsoever.

Another important question: will the HU HD Community resemble the Message Board Categories - or will it just contain an “unannounced” lengthy listing of posts?

Then, of course, there is a similar situation with the HDA’s bland Facebook page - totally lacking any form of momentum or inviting participation. I suppose it’s just there for the necessary financial angle of the charity - trying to raise funds. Social Media, in its many forms, is a data\info IN and data\info OUT entity. To be viable and successful it needs to be secure and tenable - plausible and credible.

If you really want the Message Board community to develop and thrive then you must respond to these claims for some form of involvement and inclusion - and the agreement and consent for new input from the full membership.

I'll be back on Tuesday. No, I haven't got a day off ... I'm an HD family member and Carer.


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Old 27-08-17, 06:36 PM   #23
Trish
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Default Re: Moving from Message Board

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Originally Posted by Trish View Post

Talking of which... where did you get the Sept date from?
Just answered my own ? where I took a look at the site.

I assume you saw a reply by Bill to someone who joined which says

Quote:
Thanks for being the first to make contact. We hope this site will go live at the end of September 2017.
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Old 27-08-17, 10:27 PM   #24
jacqueline
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Default Re: Message Board stuff ...

Quote:
Originally Posted by Allan View Post
.
I wrote the gist of this on Friday night but didn’t post it because the HDA is a 9-5 Monday - Friday organisation and it’s Bank Holiday weekend - so I wouldn’t get a response from HQ even if there was great urgency. The only response would be from this Message Board community.

There’s recent history re “fight the good fight” or "fight and flight" activity. First there was the failed HD APPG, then the HD saga in Casualty, then the Pope + HD … all gone awry or down the plughole.

This Message Board has always been a “raw and sensitive comfort” with its strength and commitment to getting awkward questions answered from an informed background, with a wealth of comprehensive and positively, uplifting responses in a feeling of family togetherness - allowing the extreme emotion of its members to flood this MB - whether it be with their long rants or short “predictive” requests.

Through the courage of HD+ individuals who reveal their personal situations here we have a rare insight into the range of ways in which this dreadful disease can manifest itself - but also how those same individuals courageously manage their own, sometimes, unique routines.

I really think the HDA should have done more for the benefit of the Message Board members than just having canvassed a few attendees at the 2016 AGM. The following is taken from the HDA magazine December 27, 2016:

I would like to extend a special thanks to those who attended our website feedback workshops during the weekend. Our website is an integral part of how we share information about HD and our services and we want to make sure it meets your needs. It was great to gain your views on how our website can be improved from a user’s point of view. As always we welcome your feedback about the look and content of our materials … CHIEF EXECUTIVE

It’s my firm opinion that this MB forum, with its categories, themes and threads can only successfully exist within the HDA website - such is the case with the excellent Alzheimer’s and Parkinson’s forums.

There are also wider implications to consider. Does this new HD forum intend to run with the title that it currently has on HU - Huntington's Disease Community?

I certainly hope not as it will be quickly overridden by global users who, in the main, have totally different Medical and Social Service systems from the UK in their own countries. It could easily become as fractious, fragmented and unhelpful as the Huntington’s Disease UK and Huntington’s Disease Support Group Facebook groups - where there is no organisation or follow through whatsoever.

Another important question: will the HU HD Community resemble the Message Board Categories - or will it just contain an “unannounced” lengthy listing of posts?

Then, of course, there is a similar situation with the HDA’s bland Facebook page - totally lacking any form of momentum or inviting participation. I suppose it’s just there for the necessary financial angle of the charity - trying to raise funds. Social Media, in its many forms, is a data\info IN and data\info OUT entity. To be viable and successful it needs to be secure and tenable - plausible and credible.

If you really want the Message Board community to develop and thrive then you must respond to these claims for some form of involvement and inclusion - and the agreement and consent for new input from the full membership.

I'll be back on Tuesday. No, I haven't got a day off ... I'm an HD family member and Carer.


.
I for one agree with you wholeheartedly Allan 100%.

I don't think that the claims that any of us on here are making will be answered in any way shape or form and will be, as normal, as has done in the past poo poooed by the HDA and the HDA will carry on regardless and do what they want too to get rid of this pesky message board.

I have spoken about it many times in the past at the AGMs about the message board not be taken seriously by the HDA head office. But as I have already said it is classed as a "peer to peer", unless like now they want to get rid of it and pass it on to god knows what without regard for the people who desperately need comfort as I did ten years ago.
Once the Message Board passes over to this HU (which it will 100% as sure as eggs is eggs ) then the (supposedly ) moderation and everything else that goes with this Message Board will vanish into infinity from any kind of action by the HDA. But of course it is a "peer to peer" anyway isn't it? So why worry.

Allan I don't think anyone with HD in their family ever gets a day off as it is always there 24/7.
Even on the amount of times I go away it is still there 24/7.
Thank you to the powers of Facebook that I can now ring even at sea with FaceTime or messenger 24/7 too.
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Old 28-08-17, 01:27 AM   #25
shiraz
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Default Re: Moving from Message Board

This is like the Titanic.....happy folks on board (in a relationship/marriage/family) looking forward to the future and them wham bam hd rears it's head and the ship starts to sink and survivors scramble around and some of them find safety on a lifeboat (the hda messy board) and there they find kindred spirits and succour and find a renewed lease of life/determination and strength to venture forth once more and battle on, and give up their space for others but now, thanks to those that sit on their arses all day and get paid a fortune for doing feck all far as I can see - apart from planning jollies - have decided to smash up the lifeboat coz they just don't get it and consider those fighting the tide to be nowt but pesky nuisances - they have no heart, no soul, no understanding whatsoever. Surely by now they should have realised that only two brave or foolhardy souls have decided it's a better option to drowning? The hda is useless and an utter disgrace - but sure as eggs is eggs watch this space coz soon enough they'll be saying go fundraise and send your dosh in all you worn out carers to pay our wages!! For phucks sake - wake up and smell the coffee - or in a hd house shite and pee......
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Old 28-08-17, 09:52 AM   #26
jacqueline
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Default Re: Moving from Message Board

Quote:
Originally Posted by shiraz View Post
This is like the Titanic.....happy folks on board (in a relationship/marriage/family) looking forward to the future and them wham bam hd rears it's head and the ship starts to sink and survivors scramble around and some of them find safety on a lifeboat (the hda messy board) and there they find kindred spirits and succour and find a renewed lease of life/determination and strength to venture forth once more and battle on, and give up their space for others but now, thanks to those that sit on their arses all day and get paid a fortune for doing feck all far as I can see - apart from planning jollies - have decided to smash up the lifeboat coz they just don't get it and consider those fighting the tide to be nowt but pesky nuisances - they have no heart, no soul, no understanding whatsoever. Surely by now they should have realised that only two brave or foolhardy souls have decided it's a better option to drowning? The hda is useless and an utter disgrace - but sure as eggs is eggs watch this space coz soon enough they'll be saying go fundraise and send your dosh in all you worn out carers to pay our wages!! For phucks sake - wake up and smell the coffee - or in a hd house shite and pee......
But better put than I could.
I felt sorry, plus guilty to a greater degree, when I stopped coming on this message board because I know how people struggle and needed what I needed in 2008.
But I had to take into consideration the feelings of my ten year older close family who could have been looking at what I said in private.
The HDA would do nothing to better this wonderful and much needed message board so there was only one way to go. BUT of course when it suits it is a "peer to peer". Now its not a p to p, its just a nuisance to the upper echelon's. So off with its head.
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Old 28-08-17, 02:25 PM   #27
Allan
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Default Moving to HealthUnlocked ...

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What’s all this peer to peer double-talk malarkey?

“Peer-to-peer” these days seems to relate, mainly, to money lending and investments - the business of finance. Cutting out the middle man [as in Purple Bricks].

Peer to peer lending matches up people looking to invest their money with people who want to borrow it, paying higher interest to savers and lower rates for borrowers.”

Its origins, however, are in computer networks. A peer-to-peer (P2P) network is:

(1) A network of computers configured to allow certain files and folders to be shared with everyone or with selected users. In a P2P network, the "peers" are computer systems which are connected to each other via the Internet. Files [messages and posts] can be shared directly between systems on the network without the need of a central server.

Files and folders can be configured to allow network users to copy them, but not alter them in their original location, which is a common safety precaution. However, files and folders can also be assigned a "read/write" status that allows either selected users or all users on the network to change them.

(2) Using the Internet as the world's largest file sharing network - originally for music files, and subsequently for videos. The only requirements for a computer to join a peer-to-peer network are an Internet connection and P2P software. Once connected to the network, P2P software allows you to search for files on other people's computers. Meanwhile, other users on the network can search for files on your computer, but typically only within a single folder that you have designated to share.

P2P networking makes file sharing easy and convenient. The same can obviously be said for Face-to-Face (F2F) posting on forums and Message Boards and within the vast techno-empires of Social Media outlets. Peer-to-peer communication does not necessarily, of course, mean private messaging although HU does have this facility.

I’m hopefully not scaremongering here but HDA MB users are specifically concerned about their own and their family’s privacy. So beware and be aware of how you use the term Peer to Pier - or you might end up knighted in Blackpool.

... and who is the middle man in this particular P2P scenario?


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Old 28-08-17, 06:50 PM   #28
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Default Re: Moving from Message Board

Maybe we can start a what's app group .

I don't think anyone much will use the new site other charities have their own forums I know carers uk do .

The Scottish hda have a message board I think perhaps migrate to that ?
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Old 28-08-17, 11:58 PM   #29
jacqueline
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Default Re: Moving to HealthUnlocked ...

Quote:
Originally Posted by Allan View Post
.
What’s all this peer to peer double-talk malarkey?

“Peer-to-peer” these days seems to relate, mainly, to money lending and investments - the business of finance. Cutting out the middle man [as in Purple Bricks].

Peer to peer lending matches up people looking to invest their money with people who want to borrow it, paying higher interest to savers and lower rates for borrowers.”

Its origins, however, are in computer networks. A peer-to-peer (P2P) network is:

(1) A network of computers configured to allow certain files and folders to be shared with everyone or with selected users. In a P2P network, the "peers" are computer systems which are connected to each other via the Internet. Files [messages and posts] can be shared directly between systems on the network without the need of a central server.

Files and folders can be configured to allow network users to copy them, but not alter them in their original location, which is a common safety precaution. However, files and folders can also be assigned a "read/write" status that allows either selected users or all users on the network to change them.

(2) Using the Internet as the world's largest file sharing network - originally for music files, and subsequently for videos. The only requirements for a computer to join a peer-to-peer network are an Internet connection and P2P software. Once connected to the network, P2P software allows you to search for files on other people's computers. Meanwhile, other users on the network can search for files on your computer, but typically only within a single folder that you have designated to share.

P2P networking makes file sharing easy and convenient. The same can obviously be said for Face-to-Face (F2F) posting on forums and Message Boards and within the vast techno-empires of Social Media outlets. Peer-to-peer communication does not necessarily, of course, mean private messaging although HU does have this facility.

I’m hopefully not scaremongering here but HDA MB users are specifically concerned about their own and their family’s privacy. So beware and be aware of how you use the term Peer to Pier - or you might end up knighted in Blackpool.

... and who is the middle man in this particular P2P scenario?


.
Hands up Allan its not me, honest injun,

It was Bill Crowder that quoted it was a "peer to peer" because he didn't want to offer us mere mortals any assistance.
In my estimation of his interpretation it means.......
"your on your own pals youve got nowt to do with the HDA head office in Liverpool .
Well......at least not until we the HDA head office want to shut you down because the message board is nothing but an irritant that gets on our nerves. PLUS it doesn't earn us any money in fund raising which seems to be our main thing ".
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Old 29-08-17, 12:03 AM   #30
jacqueline
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Default Re: Moving from Message Board

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Maybe we can start a what's app group .

I don't think anyone much will use the new site other charities have their own forums I know carers uk do .

The Scottish hda have a message board I think perhaps migrate to that ?
Sorry Jaq,
I don't do whats app,
And I am CERTAINLY NOT being moved to this very very impersonal HU.
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