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Old 01-02-14, 01:00 AM   #1
Allan
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Default From Huntingonland With Love

Hi everyone

I found this item so interesting that I posted it in the General HD Topics category on Thursday. But because of the regular posts on other threads it "got lost" so I decided to place it here so that others would get the opportunity to read it. It ties in closely with all my "thinking outside the box" stuff - in the hope that we can find more non-medical ways to help our HD community. We are all short of fun and laughter in our lives and anything that brings some warmth and humour - to wallop the vile realities - is of value to us.

************************************************** ***************************************

At last year's World Congress on Huntington's Disease in Brazil a play was performed:
http://dingdingdong.org/wp-content/u...ndWithLove.pdf

http://dingdingdong.org/english/from...and-with-love/
[online text]

I only came across it today via one of my lovely email friends - and a bit of googling.

I believe a couple of people from HDA HQ attended the conference - I wonder why this hasn't been relayed back to us. I can find no mention of it on the HDA website or in the last newsletter.

http://dingdingdong.org/poster-rio/
http://dingdingdong.org/english/ddds...io-de-janeiro/

Anyway, Dingdingdong is French. It is a collection of people whose sole aim is to create a living and active way of thinking through HD. It doesn’t gather general information about the disease, or raise funds to treat those affected by it - which existing organizations do a remarkably good job of already.

It’s a gathering of individuals driven by a common, vital concern for creating innovative thinking from their experience with the disease.

Their communication strategy could be termed: no condemnation without a counter-proposal. It exists as a group for building something that does not as yet exist, above all a specifically Huntingtonian way of thinking - whose current lack exacerbates the suffering of those affected by the disease.

The task of Dingdingdong is to create a system for the production of knowledge based on personal testimonies, with the goal of providing practical solutions so that users – whether they are carriers, patients, family, friends or caregivers – can live honourably with their Huntington's disease.

Such an undertaking necessitates a unique collaboration between users, researchers (scientists, philosophers, sociologists, historians etc.) and artists (visual artists, writers, choreographers etc.), so that together they can succeed in their mission: to explore the disease as if it were an unknown planet, and to seek out the proper narrative forms for relating this altogether new adventure.

http://dingdingdong.org/a-propos/din...ong-manifesto/

I copied and pasted most of the above from French translations. If you can't download the files send me a private message and I'll email the pdf documents to you.

Absolutely stimulating and refreshing - if you've got the time to read it all.

Cheers

Allan
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Old 02-02-14, 12:59 AM   #2
Cupcake
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Default Re: From Huntingonland With Love

Allan

Just read your Dingding dong, interesting reading, must have taken ages to sort that lot out and copy and paste.

Take care x
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Old 02-02-14, 09:18 PM   #3
Allan
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Default Re: From Huntingtonland With Love

Hi CC

Everyone has been saying lately what a wonderful “tool” this message board is. We have welcomed several new members recently and it is brilliant to know that they are gaining strength from reading all our old threads and messages.

My hope for our HD community is not that we grope around in desperate isolation but more that we are a collection of individuals who are looking for a positive way through this madness – the personal and social stuff – in a non-medical collection of thoughts, ideas, activities, the inevitable failures - and the few successes.

Our mainly non-medical knowledge and understanding can’t grow unless we are in interactive mode with each other – on this message board. My hope is that we all continue to rant and rave here and that will give us the strength to push our ideas and outbursts further.

I would like to see the HD message board edited and published as an HDA booklet similar to the Factsheets but with the thread headings as chapter titles. Such an alternative, non-medical understanding of HD would be an ambitious scheme needing a clear method/plan to see it through.

But that’ll never happen ……………….

This is the French equivalent of our message board: www.huntington-inforum.fr/fsb/index.php?cat=1. If you have google translation [https://translate.google.co.uk/#auto/fr/] on your laptop\PC you should be able to read the threads and messages. They are not human translations - so they’re not perfect.
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Old 02-02-14, 10:12 PM   #4
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Default Re: From Huntingonland With Love

I am a new member and I have found the mb so helpful in gaining perspective - thank you all
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Old 27-06-14, 01:28 PM   #5
Allan
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Default Re: From Huntingonland With Love

Tramlines and lpHDl

Think Athletics track – you have to keep in your lane, within the tramlines - in the Zone – I get it now. It’s not like railway lines where the signalman can pull a lever to transfer the train from one track to another. Or, where you can transfer from one train to another to reach your destination. No, he’s stuck in that groove - and he’s not even wearing blinkers …….

His “apathy” isn’t apathy as we see it. He gets locked into a topic .… over and over and over ….. and can’t crossover – even if he wanted to. So, is that when his "irritability" starts to take over - followed by "frustration"? Then, somehow, "anxiety" is filtered in. All this because he is in the Zone, within the tramlines, stuck in the groove, static ........

So, it’s up to me to create ways of crossing over into his Huntingtonland – to put myself in his shoes, to try and understand what is happening [or not] in his personal crash-trash-havoc of an existence. The great upheaval, the loss of control, the obsessive-compulsive distractions that have ripped his life apart and destroyed any future he might have hoped for.

You might find some good ideas here – all the way from Tucson, Arizona. I found parts 1 - 6 really interesting ……. among all the Americana.

How to be a Resilient Caregiver: http://www.pcoa.org/family-caregiver...ient-caregiver

Remember Dave Angel, Eco-Warrior in the Fast Show: www.youtube.com/watch?v=DLPOC9vDjLg Aaaay, how you doin'?
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Old 27-06-14, 08:01 PM   #6
toosh
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Default Re: From Huntingonland With Love

Quote:
Originally Posted by Allan View Post
Tramlines and lpHDl

Think Athletics track – you have to keep in your lane, within the tramlines - in the Zone – I get it now. It’s not like railway lines where the signalman can pull a lever to transfer the train from one track to another. Or, where you can transfer from one train to another to reach your destination. No, he’s stuck in that groove - and he’s not even wearing blinkers …….

His “apathy” isn’t apathy as we see it. He gets locked into a topic .… over and over and over ….. and can’t crossover – even if he wanted to. So, is that when his "irritability" starts to take over - followed by "frustration"? Then, somehow, "anxiety" is filtered in. All this because he is in the Zone, within the tramlines, stuck in the groove, static ........

So, it’s up to me to create ways of crossing over into his Huntingtonland – to put myself in his shoes, to try and understand what is happening [or not] in his personal crash-trash-havoc of an existence. The great upheaval, the loss of control, the obsessive-compulsive distractions that have ripped his life apart and destroyed any future he might have hoped for.

You might find some good ideas here – all the way from Tucson, Arizona. I found parts 1 - 6 really interesting ……. among all the Americana.

How to be a Resilient Caregiver: http://www.pcoa.org/family-caregiver...ient-caregiver

Remember Dave Angel, Eco-Warrior in the Fast Show: www.youtube.com/watch?v=DLPOC9vDjLg Aaaay, how you doin'?
Some good reading there Allan. Thanks
Toosh
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Old 25-08-14, 12:14 PM   #7
Allan
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Default Re: From Huntingtonland With Love

Hi all

Sunday morning: the weather was lovely and sunny yesterday - and today it’s horrible with the grey sea pounding in and the rain pouring down. Sounds like something we all know too well.

I have just come across this book title in my August Branch Newsletter, Shrinking the Smirch by Jo Johnson: http://www.mstrust.org.uk/interactiv...their-symptoms

and it can be bought online here: http://www.amazon.co.uk/Shrinking-Sm...=cm_cr_pr_pb_i

Also today, I have received from my Branch, via email, the July/August Branch and Support Group News: An update from the HDA. Obviously, it’s a bit late and it contains these items:

The Just Giving Awards return this September and the hunt has begun for a charity, based in the UK or Ireland, to become Charity of the Year. Voting is now open and you’ve got until Saturday 23rd August to vote for The Huntington's Disease Association. Please follow this link to place your vote: www.justgiving.com/en/charity-of-the-year
(You will need to have a Facebook account in order to place your vote). Do share this far and wide and thank you for your support.

and ………

The Care Act 2014 will replace a number of previous laws on social care and support. From April 2015 Local Councils will have to follow the guidance that is provided on the Act. Key points of the act;

Personalisation and wellbeing are at the core.
The Act will increase transparency and openness and insist on clearer guidance on how people navigate the system. Anyone who has substantial difficulty in being involved in their assessment and care and support planning, and has no one appropriate to support them, will be assisted by an independent advocate.

There is an increased emphasis on prevention. Local Authorities (LAs) must provide or arrange services, resources or facilities that maximize independence for people with tertiary prevention needs (those with established health conditions).

For the first time there will be a limit (£72,000) on the amount anyone has to pay for their care and no-one will be forced to sell their property within their lifetime to pay for residential care (the universal deferred payment scheme. Please note this is an additional reform and will come into play in 2016). A national mini-mum eligibility threshold has been set determining when a LA must provide care. In practical terms it will be equivalent to ‘substantial’ in the current system (this is the current level operated by the vast majority of LA’s).

Carers will have new rights. They will be put on the same legal footing as the people they care for.

HDA Involvement:
We are in the process of responding to the draft guidance that will sit alongside the Bill, responses are in on the 15th Aug. We are a member of the ‘Care and Support Alliance’ (C&SA - consortium of over 70 charities that support people with disabilities and older people and campaigns to keep adult care funding and reform on the political agenda) and Ruth Abuzaid, Deputy Head of Care Services, attends these meetings. The C&SA are responding in a very detailed fashion and have had meetings with the Department of Health to put forward thoughts / ideas / concerns and suggestions from all the charities they represent.

There is other relevant stuff too that I can’t find on this website:

The Honey Rose Foundation: The Honey Rose foundation grants special wishes for adults, it is the only charity offer-ing this for over 40’s. They will do anything (within reason) that is UK based. For more information, please visit: http://www.honeyrosefoundation.org.uk

Meeting rooms available at supermarkets
We have been advised by someone who works for Asda that many of their stores have meeting rooms available which charities can hire free of charge. If your branch or support group are looking for a new meeting venue, it may be worth approaching your local supermarket to ask if they have such facilities available.

BLTNIS
.
.
.
.
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Old 25-08-14, 05:34 PM   #8
Allan
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Default Re: From Huntingonland With Love

Quote:
Originally Posted by jacqueline View Post
I would have loved to have gone to the Conference in Brazil but nobody seemed to truly know the ins and outs of how to get there and everything else I would have needed to have known to have gone on my own. .........
As Cath Stanley and Matt Ellison attended the Brazil Conference surely there was info available at HQ. There is one coming up in Barcelona soon.

Here are the very badly recorded videos from Brazil: http://vimeo.com/album/2556826/page:...rmat:thumbnail

I was hoping to attract attention to my post of earlier today as the content is more current - well almost - than that from last winter, that all the important stuff I am receiving from my HDA Branch is "past its use\sell by date".

Here's some interesting stuff:

http://careandsupportalliance.com

http://www.gov.uk/government/publica...t-1-factsheets

The MS Society also publish the excellent Short Breaks Guide: http://www.mssociety.org.uk/sites/de...ide-Jul-13.pdf

and it's still raining heavily with a choppy sea ............
>
>
>
>
>
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Old 26-08-14, 07:29 AM   #9
toosh
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Default Re: From Huntingonland With Love

Quote:
Originally Posted by Allan View Post
As Cath Stanley and Matt Ellison attended the Brazil Conference surely there was info available at HQ. There is one coming up in Barcelona soon.

Here are the very badly recorded videos from Brazil: http://vimeo.com/album/2556826/page:...rmat:thumbnail

I was hoping to attract attention to my post of earlier today as the content is more current - well almost - than that from last winter, that all the important stuff I am receiving from my HDA Branch is "past its use\sell by date".

Here's some interesting stuff:

http://careandsupportalliance.com

http://www.gov.uk/government/publica...t-1-factsheets

The MS Society also publish the excellent Short Breaks Guide: http://www.mssociety.org.uk/sites/de...ide-Jul-13.pdf

and it's still raining heavily with a choppy sea ............
>
>
>
>
>
Interesting reading Allan, The Public Accounts committee has slated the welfare reforms made by this government.

“The new Care Act is a bold and ambitious bid to address the crisis – it will end the postcode lottery, ensure carers get more support, and promote wellbeing and personalised support.

“At the same time, Better Care Fund plans to integrate health and social care move us closer towards a preventive system that keeps people out of hospital and out of crisis-care.

Lets hope the above does happen but sadly I feel that funding will always be an issue.

Shame the closing date to vote in the just giving charity of the year was Saturday 23rd August. Missed the boat again
Toosh
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Old 31-07-15, 06:27 PM   #10
Stuart
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Default Re: From Huntingonland With Love

Quote:
Originally Posted by Allan View Post
Hi everyone

I found this item so interesting that I posted it in the General HD Topics category on Thursday. But because of the regular posts on other threads it "got lost" so I decided to place it here so that others would get the opportunity to read it. It ties in closely with all my "thinking outside the box" stuff - in the hope that we can find more non-medical ways to help our HD community. We are all short of fun and laughter in our lives and anything that brings some warmth and humour - to wallop the vile realities - is of value to us.

************************************************** ***************************************

At last year's World Congress on Huntington's Disease in Brazil a play was performed:
http://dingdingdong.org/wp-content/u...ndWithLove.pdf

http://dingdingdong.org/english/from...and-with-love/
[online text]

I only came across it today via one of my lovely email friends - and a bit of googling.

I believe a couple of people from HDA HQ attended the conference - I wonder why this hasn't been relayed back to us. I can find no mention of it on the HDA website or in the last newsletter.

http://dingdingdong.org/poster-rio/
http://dingdingdong.org/english/ddds...io-de-janeiro/

Anyway, Dingdingdong is French. It is a collection of people whose sole aim is to create a living and active way of thinking through HD. It doesn’t gather general information about the disease, or raise funds to treat those affected by it - which existing organizations do a remarkably good job of already.

It’s a gathering of individuals driven by a common, vital concern for creating innovative thinking from their experience with the disease.

Their communication strategy could be termed: no condemnation without a counter-proposal. It exists as a group for building something that does not as yet exist, above all a specifically Huntingtonian way of thinking - whose current lack exacerbates the suffering of those affected by the disease.

The task of Dingdingdong is to create a system for the production of knowledge based on personal testimonies, with the goal of providing practical solutions so that users – whether they are carriers, patients, family, friends or caregivers – can live honourably with their Huntington's disease.

Such an undertaking necessitates a unique collaboration between users, researchers (scientists, philosophers, sociologists, historians etc.) and artists (visual artists, writers, choreographers etc.), so that together they can succeed in their mission: to explore the disease as if it were an unknown planet, and to seek out the proper narrative forms for relating this altogether new adventure.

http://dingdingdong.org/a-propos/din...ong-manifesto/

I copied and pasted most of the above from French translations. If you can't download the files send me a private message and I'll email the pdf documents to you.

Absolutely stimulating and refreshing - if you've got the time to read it all.

Cheers

Allan



Wow Allan,
My head is spun by this woman A.K.'s manifesto.
I went looking on the board today for some inspiration and have found it here.
Thank you
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