Search found 20 matches

by Sueb
Thu Oct 30, 2014 10:15 am
Forum: 2014 Australia POT Information Day
Topic: 2014 Australia POT Information Day
Replies: 2
Views: 3365

Re: 2014 Australia POT Information Day

Hi Everyone! Those who managed to make it to the first Australia-NZ OT Meeting in Sydney in 2013 know how professional, knowledgeable and nice Dr Julian Rodrigues is. He is a Perth-based neurologist specialising in movement disorders who has a particular interest in OT. Most of his patients could no...
by Sueb
Sun Sep 28, 2014 3:13 pm
Forum: 2014 UNMC - OMAHA OT Meeting - Research
Topic: Reports from the Omaha Meeting and Research 2014
Replies: 39
Views: 7388

Re: Reports from the Omaha Meeting and Research 2014

From Sue Boyd Dr Torres-Russotto’s talk to the group, Thursday 25 September Summary of Questions and Answers (Dr Russotto took questions throughout his presentation, so these are selective notes) Q: When will we see the results of this research? A: It will take time for the team to study the data co...
by Sueb
Sat Sep 27, 2014 2:17 pm
Forum: 2014 UNMC - OMAHA OT Meeting - Research
Topic: Reports from the Omaha Meeting and Research 2014
Replies: 39
Views: 7388

Re: Reports from the Omaha Meeting and Research 2014

Hi Everyone I wrote this on Facebook on my way out of Omaha, and am now copying it here. I hope it is of interest... Friday 26 September 2014 I'm now on an American Airlines plane flying out of Omaha Nebraska. I'm tucked right in the back corner, with the view of the plane's engine, and the smell of...
by Sueb
Sun Jun 23, 2013 1:33 am
Forum: 2013 OT Meeting - Sydney, Australia
Topic: Reports and News from the Australia OT Meeting 2013
Replies: 19
Views: 11564

Re: Reports and News from the Australia OT Meeting 2013

Report from the Sydney OT Meeting, June 21-22 2013 Firstly, thank you SO much Gloria, for the beautiful plaque of appreciation and the 'thank you" message, which was read out by Lynette Pickles at the end of our meeting. How well planned and thoughtful of you! I am very touched. The meeting went wel...
by Sueb
Fri Jun 21, 2013 2:02 am
Forum: 2013 OT Meeting - Sydney, Australia
Topic: Update on Sydney OT Meeting Arrangements
Replies: 3
Views: 2274

Re: Update on Sydney OT Meeting

I had lunch in Sydney yesterday with Dr Marie Vidaihlet who works with Dr Sabine in Paris. I've posted the account of that on the research grants page, but some parts are relevant to our OT meeting which starts with an informal dinner this evening. http://www.orthostatictremor.org/phpBB3/viewtopic.p...
by Sueb
Fri Jun 21, 2013 1:55 am
Forum: 2013 OT Meeting - Sydney, Australia
Topic: Reports and News from the Australia OT Meeting 2013
Replies: 19
Views: 11564

Reports and News from the Australia OT Meeting 2013

I'm so cross! I 'm working in a hotel in Sydney which provides 30 mins of free internet access. I'd just finished writing about my lunch with Dr Marie Vidailhet in Sydney and as I pressed 'submit' the time expired and I was shut out, and all that work was lost! Well, here we go again, now with 24 hr...
by Sueb
Sat Jun 08, 2013 9:20 pm
Forum: 2013 OT Meeting - Sydney, Australia
Topic: Update on Sydney OT Meeting Arrangements
Replies: 3
Views: 2274

Re: Update on Sydney OT Meeting

A quick update on the Sydney meeting - we now have 28 people coming, including OT sufferers from Australia and NZ and partners. There is still a little time for new people to sign up, but any more and we will need a new meeting room! We pay the hotel next week. Fourteen of us will be at the hotel th...
by Sueb
Sat Jun 08, 2013 9:02 pm
Forum: OT- "THINGS" that help
Topic: Using a smartphone to measure your tremor
Replies: 40
Views: 25958

Re: Using a smartphone to measure your tremor

All this do it yourself technology is great. I have just uploaded Liftpulse to my iPhone and holding the phone in place with a long sock recorded the tremors. Dr Rodrigues demonstrated to me a new handheld device he has. It attaches to your leg with three stickypad sensors and wires, and you hear th...
by Sueb
Sun May 26, 2013 12:26 am
Forum: 2013 OT Meeting - Sydney, Australia
Topic: Update on Sydney OT Meeting Arrangements
Replies: 3
Views: 2274

Update on Sydney OT Meeting Arrangements

From sueb 26 May 2013 Arrangements are now in place for the First Australia and New Zealand OT Meeting, to be held in Sydney on Saturday 22 June 2013. 18 of us living with IT and five accompanying people have signed up – but there is still time to register, by sending me an email via this site. Four...
by Sueb
Sun Apr 07, 2013 9:02 pm
Forum: 2013 OT Meeting - Sydney, Australia
Topic: 2013 OT Meeting Australia News!
Replies: 16
Views: 5038

Re: 2013 OT Meeting Australia News!

Dear Betty. We will certainly take notes, and are having the whole event professionally video'ed. we will then have it edited and put it on the website. Thanks for your support. Sueb
by Sueb
Wed Mar 13, 2013 4:24 am
Forum: 2013 OT Meeting - Sydney, Australia
Topic: 2013 OT Meeting Australia News!
Replies: 16
Views: 5038

Re: 2013 OT Meeting Australia News!

From sueb 13 March 2013 This is the message I have sent to the OT sufferers in Australia who had earlier made contact with me: "Dr Julian Rodrigues is the recipient of one of the OT Forum’s NORD research grants. He is based here in Perth and has a research practise in Sir Charles Gairdiner Hospital ...
by Sueb
Tue Jun 19, 2012 2:31 am
Forum: NORD - 2012 OT Research Grant
Topic: NORD OT RESEARCH HAS BEEN ANNOUNCED!!
Replies: 11
Views: 3063

Re: NORD OT RESEARCH HAS BEEN ANNOUNCED!!

Great news that one of the two research grants is for Dr Julian Rodrigues, who is here in my home town of Perth, Western Australia. My neurologist has already referred me to him to be part of his research, so this is very exciting. I am also very pleased about the other research group in Paris, as t...
by Sueb
Tue Jun 19, 2012 2:29 am
Forum: NORD - 2012 OT Research Grant
Topic: A brief history, information and thanks.
Replies: 3
Views: 1685

NORD Research Grants

Great news that one of the two research grants is for Dr Julian Rodrigues, who is here in my home town of Perth, Western Australia. My neurologist has already referred me to him to be part of his research, so this is very exciting. I am also very pleased about the other research group in Paris, as t...
by Sueb
Sun Jun 17, 2012 1:42 am
Forum: NORD - 2012 OT Research Grant
Topic: Pregabalin
Replies: 2
Views: 1763

Pregabalin

I see our Perthresearch study's looking at the drug Pregabalin . Does anyone have any experience of using this drug?
by Sueb
Fri Jun 15, 2012 5:09 am
Forum: NORD - 2012 OT Research Grant
Topic: OT Research Grants
Replies: 1
Views: 1654

OT Research Grants

Great news that one of the two research grants is for Dr Julian Rodrigues, who is here in my home town of Perth, Western Australia. My neurologist has already referred me to him to be part of his research, so this is very exciting. I am also very pleased about the other research group in Paris, as t...

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