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 here (Known as Charlie’s). He is also now “my” neurologist.
He will be attending the 17th International Congress on Parkinson's and Movement Disorders, which is being held in Sydney, June 16-20, and has agreed to participate in a meeting of OT sufferers in Australia on Saturday June 22 in Sydney. If you are interested, the link to the Congress is
http://www.mdscongress2013.org/
I am willing to arrange the meeting on June 22, if you, and any other OT sufferers that you know, are interested.
The only OT sufferers in Australia who contacted me after the initial note on the Forum website are spread through the Eastern States and I am the only one in Perth, so it seems most sensible to hold our meeting in Sydney, and hope that several of you will be able to make it.
However, Dr Rodrigues says he has about 10 OT patients in his practise here in Perth, so we may not be so unique. He says he will publicise the meeting to them, and then we can see if any of them decide to come east too. We shall also ask his Sydney colleague, Dr Fung at Westmead in Sydney, to pass the information to his OT patients also.
We are going to put the information about the meeting on the OT Forum website, and send emails to all the OT Forum members, and we may find that there are other OT sufferers in Australia.
So, can you let me know if you are interested to come to a meeting on June 22? And if you are in touch with anybody else who would like to come?
I will then, with help from Dr Rodrigues’ colleagues in Sydney, locate a suitable meeting place. Our friends in the USA say they found it useful to extend the meeting over a full day and have a dinner both before and afterwards, so people could really get to know each other and share information.
Once we have a venue, we can investigate accommodation options. The group which is organising accommodation for the Congress is willing to help us too. I envisage that having identified some accommodation options, we would each book and pay for our own accommodation.
I look forward to hearing back from you"
Several of those in Australia who originally made contact have now responded - from Sydney, Brisbane, Perth, Hobart and South Australia
- and most have said they are interested in attending the meeting. So I am now working to find a suitable meeting venue, preferably with some associated accommodation which is suitable for those of us with OT.
I have been asked whether spouses are welcome. Of course! And any body else, you want to bring along for support.
If you or someone you know would be interested in coming to the Sydney meeting, please let me know!