| Author |
Message |
Forum: Introductions and welcomes Topic: Just saying hi |
| sonnie |
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Posted: Fri Sep 10, 2010 12:25 am
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Replies: 3
Views: 20
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Hi Peter - welcome to our forum. We are interested in hearing more from you. You can check out our stories in the various topics on the forum.
Welcome aboard,
sonnie  |
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Forum: General Topic: National Conference Program and Registration Form |
| sonnie |
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Posted: Tue Sep 07, 2010 1:02 pm
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Replies: 25
Views: 721
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| Hey everyone - I hope you have a great time meeting up at the conference (oh, and that you find out heaps of useful stuff and get to share all your experiences). I'm looking forward to hearing all about it - and photos too, please, Michelle http://www.hdaustralia.org/images/smilies/icon... |
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Forum: General Topic: Difficulty With Telephones |
| sonnie |
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Posted: Sun Sep 05, 2010 2:21 pm
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Replies: 4
Views: 37
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| Hi Buddybird - that must be really annoying. I know with my uncle that he has gone deaf in the 8 months he's been in the Mental Health Unit - his ears are full of wax, and even though his wife has asked them to clear out the wax - they don't do it properly. Do you know if they've checked Anthony's e... |
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Forum: General Topic: Gaps In Services For People With HD |
| sonnie |
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Posted: Thu Aug 26, 2010 5:36 pm
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Replies: 13
Views: 135
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| Thanks everyone for your concerns about my uncle's situation. I made a few phone calls yesterday and spoke to a nurse and a doctor (and gave her Westmead HD Unit's contact people and numbers - she thought his HD was only causing his speaking problems http://www.hdaustralia.org/images/sm... |
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Forum: General Topic: Gaps In Services For People With HD |
| sonnie |
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Posted: Tue Aug 24, 2010 6:19 pm
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Replies: 13
Views: 135
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| Hi Buddybird, Ditto Michelle's comments - absolutely pathetic situation for people with HD and their families in Sydney and NSW. Hi Michelle - to answer your question - no, no HD people have been brought in to talk about HD to Mental Health Unit staff. I can never find out any information from t... |
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Forum: General Topic: Gaps In Services For People With HD |
| sonnie |
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Posted: Tue Aug 24, 2010 1:45 pm
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Replies: 13
Views: 135
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| Hi Buddybird, Well my uncle didn't even get to first base as far as carers are concerned. His wife got short shrift when she phoned the Huntington Unit (Lottie Stewart) at Westmead Hospital. They had a visit from a social worker from Westmead HD unit to their home who told them all the modificatio... |
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Forum: General Topic: Gaps In Services For People With HD |
| sonnie |
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Posted: Tue Aug 24, 2010 1:32 am
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Replies: 13
Views: 135
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| Hi Buddybird - is your friend's Certificate only relevant to Victoria? I can give information on huge gaps (like non-existent) in NSW in relation to my uncle who has HD and is still in an acute mental health unit 8 months on, which I find totally unsatisfactory. It's worse than a jail sentence for s... |
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Forum: Introductions and welcomes Topic: Hi My name is Kelly |
| sonnie |
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Posted: Thu Aug 12, 2010 1:16 pm
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Replies: 18
Views: 250
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| Hi Kelly - you must have your hands full with the little one with chickenpox (I remember having it as a child - you do want to just scratch). If you want to investigate getting counselled and tested - I don't think you really need to see a GP doctor yet (maybe later when you need referrals to a ge... |
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Forum: Introductions and welcomes Topic: Hello to everyone... |
| sonnie |
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Posted: Thu Aug 12, 2010 12:55 pm
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Replies: 5
Views: 144
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| Hi Jodie - welcome to the forum. You have written a wonderful introduction to yourself - much of what you have written resonates with me, and I'm sure others on the forum. Certain things leapt out at me - "surreal", exactly the right word (when I got my results it felt like an "out of... |
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Forum: Introductions and welcomes Topic: Hi My name is Kelly |
| sonnie |
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Posted: Mon Aug 09, 2010 11:45 am
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Replies: 18
Views: 250
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| Hi Kelly - in reference to lilcarls' post about doctor referrals. In 2006 in NSW my GP referred me to a pathology lab - but I discovered that there are no places in NSW that do the HD testing. Plus I also discovered that only specialists, neurologists and geneticists, can refer you for blood tests f... |
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Forum: Introductions and welcomes Topic: Hi My name is Kelly |
| sonnie |
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Posted: Sat Aug 07, 2010 4:08 pm
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Replies: 18
Views: 250
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| Hi Kelly - yes, you have to go through counselling first before you test. My understanding is that when genetic tests became available - they decided on a worldwide protocol for testing, to make sure people understood the ramifications of getting tested and what the results would mean (once you let ... |
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Forum: Introductions and welcomes Topic: Hi My name is Kelly |
| sonnie |
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Posted: Sat Aug 07, 2010 3:07 am
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Replies: 18
Views: 250
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Hi Kelly - if you go to www.ahdansw.asn.au and follow the links, it should take you to more information on HD, and how to be tested etc, and also how to contact the NSW HD Association, and also Westmead for counselling and testing.
All the best,
sonnie |
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Forum: Introductions and welcomes Topic: Hi My name is Kelly |
| sonnie |
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Posted: Sat Aug 07, 2010 2:53 am
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Replies: 18
Views: 250
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| Hi Kelly - glad to hear from you again. About getting tested - if you live in Sydney, from what I've gathered, getting in touch with the Westmead HD unit is the way to start. I also live in Sydney and was keen to forge ahead in getting tested in 2006. Westmead was a long wait back then - so I went... |
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Forum: Introductions and welcomes Topic: Hi My name is Kelly |
| sonnie |
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Posted: Fri Aug 06, 2010 4:56 pm
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Replies: 18
Views: 250
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| Hi Kelly - a big welcome to the forum. A lot of us are familiar with the overwhelming feeling of finding out you have HD in your family - I only found out in 2006. We also know how devastating it is to watch your family members virtually change very slowly in front of your eyes. You are fortunate th... |
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Forum: Carers Topic: Public Guardian NSW and HD |
| sonnie |
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Posted: Tue Jul 27, 2010 5:09 pm
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Replies: 7
Views: 181
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| Thanks, Mark. There is a hospital social worker already involved. I did access the government website before the Guardianship Tribunal hearing - so at least I was aware of the videolink format. When I visited today my uncle said they were probably going to send him to an aged care facility that he... |
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