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General HD topics Open forum for all other issues concerning Huntington’s disease

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Old 14-04-14, 01:46 PM   #1
Allan
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Default It's always good to talk [and read and write] ........

Hi everyone

I was just wondering if "readers and writers" are aware of other HD organisations available for access. I'm sure most of you are - but I thought it might be useful to display just a few that I have come across in my recent searches for an understanding of why we are here.

Some National Organisations …….

The Scottish Huntington’s Association (SHA): www.hdscotland.org

Huntington’s Disease Association Northern Ireland: http://hdani.org.uk

Huntington’s Disease Association of Ireland: www.huntingtons.ie

Huntington’s Disease Society of America: www.hdsa.org

Huntington Society of Canada: www.huntingtonsociety.ca

HD Australia: www.hdaustralia.org

Huntington's Disease Associations of New Zealand: www.huntingtons.org.nz

Dingdingdong: http://dingdingdong.org [just click “English” if your French is a bit rusty]


Information, Research and General Help ……

UCL Huntington’s Disease Research – Information for Patients, Relatives and Carers: http://hdresearch.ucl.ac.uk/

Huntington’s Disease: www.ygyh.org/hd/whatisit.htm [interactive website]

NHS Healthcare Map – HD:http://healthguides.mapofmedicine.co..._disease1.html

A Physician’s Guide to the Management of Huntington’s Disease: http://www.hdsa.org/images/content/1...Ref_11_web.pdf

Huntington’s Disease Advocacy Centre: www.hdac.org

Huntington’s Disease Advocacy Centre: www.hdac.org/links

Huntington’s Outreach Project for Education at Stanford [HOPES]: http://hopes.stanford.edu

HD lighthouse is central to research in the HD community: www.hdlighthouse.org/research

HDBuzz is reviewed and written by scientists ...... but written in plain English! www.HDbuzz.net

Euro-HD Registry: www.euro-hd.net

Neuroscience: http://brainmind.net/BrainLecture9.html

HD Research Crossroads provides a very detailed and scientific evaluation of HD research, especially the evaluation of potential new drugs: www.hdresearchcrossroads.org

Huntington Study Group: www.huntington-study-group.org

CHDI Foundation: http://chdifoundation.org/

A Manual for People Living with ALS: http://www.als.ca/sites/default/file...SH%20Final.pdf [well worth reading]

Suggestions and Information on Dysarthria [Slurred Speech] and Augmentative Communication:
http://www.alsa.org/als-care/resourc...ed-speech.html

Human saccadic eye movements: http://www.scholarpedia.org/article/..._eye_movements

HD and Nutrition: http://www.nutrition411.com/educatio...-and-nutrition

Huntington's Disease Lighthouse Families: http://hdlf.org

Hereditary Disease Foundation: www.hdfoundation.org

Huntington’s Disease Drug Works: http://hddrugworks.org

HD - some medications: http://www.wellness.com/reference/co...-and-treatment

Huntington’s Disease: http://ghr.nlm.nih.gov/condition/huntington-disease

The huntingtin Gene and HD: http://www.genetics.edu.au/Publicati...ts/FactSheet44

Huntingtin and Huntington's Disease: http://nickelsgen677s09.weebly.com

Huntington’s Disease Insights: www.e-digitaleditions.com/t/11694

Nancy Wexler Interview: http://www.hdsa.org/images/content/1...volume%203.pdf

From Huntingtonland with Love: http://dingdingdong.org/english/from...land-with-love


Although all the stuff above is interesting information, don’t take anything for granted.

Websites to be wary of ………

Huntington's Disease Association - Wisconsin's Huntington Advancement Association: http://hdsa-wi.org
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Old 16-04-14, 08:32 PM   #2
Allan
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Default Re: It's always good to talk [and read and write] ........

Hi J

I think what I am trying to say with all my lengthy lists posted here, there and everywhere is that – yes, we can read through all the relevant weblinks [if we can find the time!] but it is still down to us to become the best possible Carers; Nutritionists; amateur Psychologists; the experts who work out what is the best combination of medication [via GP prescription or any other means]; the “observers” who try to figure out and simplify the best way to organise the home and to structure each day; the “administrators” who record and pass on all the HD observational info to the relevant professionals; the authors of our “rants and raves”; the people who endeavour to promote a sense of wellbeing – of comfort and security.

To all of you here who are HD positive [symptomatic and non-symptomatic] I apologise if I seem to be constantly throwing this at you “full in the face” knowing that you just want to chat and talk about your own personal issues. Many of us, however, are trying to do the same thing on behalf of our loved ones and some of us haven’t a clue where we’re at ……... there’s “something new” happening almost every day.

So, I suppose, reading all this stuff just makes me realise that, yes, we are all the experts in our own particular, personal situations – from despair to hope, the prospects and the possibilities.

We have to put in the hard work of piecing things back together constantly – and often failing – because no one is going to come to our rescue. No one can tell us that it has all just been some big misunderstanding – a mistake – an error of judgment. We have to be strong .......... and find the courage to pick up the pieces.

The more we all write about our own situations here the more we will all learn, not just how to cope with HD but how to live with it - constantly in the background/foreground.

Tonight I’m listening to a pure voice: www.youtube.com/watch?v=ROAL9WI7LXY and www.youtube.com/watch?v=rVblehWofVk
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Old 16-04-14, 09:09 PM   #3
Holly
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Default Re: It's always good to talk [and read and write] ........

Quote:
Originally Posted by Allan View Post
Hi J

I think what I am trying to say with all my lengthy lists posted here, there and everywhere is that – yes, we can read through all the relevant weblinks [if we can find the time!] but it is still down to us to become the best possible Carers; Nutritionists; amateur Psychologists; the experts who work out what is the best combination of medication [via GP prescription or any other means]; the “observers” who try to figure out and simplify the best way to organise the home and to structure each day; the “administrators” who record and pass on all the HD observational info to the relevant professionals; the authors of our “rants and raves”; the people who endeavour to promote a sense of wellbeing – of comfort and security.

To all of you here who are HD positive [symptomatic and non-symptomatic] I apologise if I seem to be constantly throwing this at you “full in the face” knowing that you just want to chat and talk about your own personal issues. Many of us, however, are trying to do the same thing on behalf of our loved ones and some of us haven’t a clue where we’re at ……... there’s “something new” happening almost every day.

So, I suppose, reading all this stuff just makes me realise that, yes, we are all the experts in our own particular, personal situations – from despair to hope, the prospects and the possibilities.

We have to put in the hard work of piecing things back together constantly – and often failing – because no one is going to come to our rescue. No one can tell us that it has all just been some big misunderstanding – a mistake – an error of judgment. We have to be strong .......... and find the courage to pick up the pieces.

The more we all write about our own situations here the more we will all learn, not just how to cope with HD but how to live with it - constantly in the background/foreground.

Tonight I’m listening to a pure voice: www.youtube.com/watch?v=ROAL9WI7LXY and www.youtube.com/watch?v=rVblehWofVk
Hi Allan
I just want to say that I really appreciate it when you put together all of the links for various aspects relating to HD. Although I feel I have read extensively on HD since my husband tested positive, you have always provided good advice along with the other members who post regularly. Although I don't post very often, I am reading the message board most days, so thank you again.
Holly
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Old 16-04-14, 09:51 PM   #4
LECS
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Default Re: It's always good to talk [and read and write] ........

I want to say thank you for all the links that you post and how useful I have found them and that I agree with you. The more we share the more we can learn and on a personal note, I appreciate the comfort that I get from knowing that someone understands what I am experiencing. Keep it up.
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Old 17-04-14, 07:58 AM   #5
toosh
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Default Re: It's always good to talk [and read and write] ........

Quote:
Originally Posted by Holly View Post
Hi Allan
I just want to say that I really appreciate it when you put together all of the links for various aspects relating to HD. Although I feel I have read extensively on HD since my husband tested positive, you have always provided good advice along with the other members who post regularly. Although I don't post very often, I am reading the message board most days, so thank you again.
Holly
Ditto From Toosh.
Always grateful for the info Allan
Have a good Easter
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Old 17-04-14, 07:59 AM   #6
toosh
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Default Re: It's always good to talk [and read and write] ........

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Originally Posted by toosh View Post
Ditto From Toosh.
Always grateful for the info Allan
Have a good Easter
Would be good if there was somewhere (like a library on the MB) to save all the links
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