June 22, 2013 - news and discussion

Moderator: gloria

#3601
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 hrs internet access, and maybe it will be written better the second time around. Grrrr!

Dr Marie Vidailhet is currently in Sydney attending the 17th International Congress on Movement Disorders. She works with Dr Meunier on the research project in Paris which we are funding.
I'm in Sydney for our first ANZ OT Meeting and we were able to grab a quick lunch together between sessions of the Congress. AmazIngly, in the huge throng at the Congress, she and Julian Rodrigues had not met up.

She was very charming and hugely impressed that I had changed my flight from Canberra in order to meet her. (Thanks Jeff for the heads-up that she would be in Sydney).

She briefed me on their research project in terms which we know already. She is confident that they will come up with some publishable information which will add to the body of knowledge about the location of OT and ways of treating it.

She says they have 30 OT patients. Like us, they are mostly scattered and lonely souls.

Our OT meeting in Sydney begins with informal dinner tonight, and I have been giving thought as to how to make any future meetings sustainable and with a better local organisational basis. I was therefore interested to hear from her that there is an Association in France called APTES. It focusses mostly on Essential Tremor but has a small OT sub group. They meet annually and publish a newsletter and have a website. In French of course. Do we know about this already?

I wondered whether one of our bilingual Forum members from Canada might be interested in checking it out and seeing whether it has anything of relevance to us?

http://www.aptes.org/

She said that the APTES members also kept an eye out for anything new on OT, in the research or the media, and then drew it to the attention of the neurologists. She said this was very useful as the neurologists don't have time to keep up with the research.

Do we do this with the information we find?

In organising the Sydney meeting I have received emails from Forum members in Europe, wishing they had such a meeting there. Dr Vidailhet said, cautiously, that if such a meeting were organised, and the organisational and funding challenges were taken care of, she could be prepared to participate , in the way Julian Rodrigues is here.

She was extremely warm and nice and, amazingly, knew a young French neurologist I have known personally since birth, who works in her Institute. Small world.

I'm sorry we could not not meet for longer but hope some of these leads will be helpful.

Sue Boyd with Dr Marie Vidailhet in Sydney 20 june 2013

Image

site of the OT meeting

Image

Sydney OT meeting : sculptures by visiting Chinese artist Xu Hongfei
- To encourage us!

Image
#3605
Sue:

What a wonderful report about your meeting with Dr. Marie Vidailhet!!! All that you have put together for this event will become a time when 'loneliness" will not be present for every OT person attending and I look forward to hearing more about Australia's first OT meeting. Thank you for the pictures they are great to look at when we are many miles apart.

Enjoy , Gloria
#3607
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 well, I think. There were eighteen of us with OT, as well as nine accompanying people, who were very supportive and helpful during the meeting.

Dr Julian Rodrigues had been ill in bed for the week before, and so had missed most sessions of the International Congress on Meeting Disorders. But he roused himself from his sickbed, dosed himself up and dragged himself to our meeting.

He led a terrific day, covering the experiences of OT, the science of movement and of movement disorders and specifically OT, to the extent that it is known, the gadgets and coping mechanisms we use to enable us to lead full lives despite the disorder, his past research, and the work of others, the research he is currently working on, as well as the work he plans to use the NORD grant for. He covered the medications used, and how they work.

He brought along the electronic pressure pad used to measure movement, and several of us had a go on it. He also brought along a device which detects tremors and enables us to hear them - as others have said, sounds like a helicopter taking off!

It was a very interactive day, everyone participated in the discussions and had the opportunity to share and compare experiences in a very respectful way.

The fourteen of us who had arrived the previous evening shared a lovely dinner, getting to know each other and enjoying the wonderful feeling of being amongst other who also knew what it was about , for the first time. After the months of planning, I personally felt very emotional about it all, and was close to tears.

After the day's meeting, seventeen of us had dinner at the nearby Greek restaurant, which served enormous piles of grilled meat - not much fun for the single vegetarian among us! But the Sydney-based participants had full doggy bags to take home with them.

There was some suggestion around the table that we should try and meet again in a couple of years.
Julian said that next time we should have more than one presenter.

The venue worked well - the Novotel Brighton Beach looked after us excellently. We were able to look out over Botany Bay, through the pouring rain. Botany Bay is the site of the landing in 1771 by Captain Cook and his small flotilla, the first landing by the British on Australian soil which led to the colonisation of Australia.

Jonathan North made a full video recording of the day, and will now edit it and provide us with something useful for the website. The redoubtable Anne Nolan took copious notes and will provide a written record. Poor woman is currently clearing out a parental home and arrived at the hotel with a car full of stuff from the house. Sadly, the car was broken into in the hotel garage, though it appeared nothing had been stolen. Luckily she had hauled all the valuables up with her, into the meeting room.

It was specially great to have four new friends from New Zealand, who arrived despite huge storms and airport closures, and our single lonely particpant from Tasmania and her husband also seemed to find the meeting especially valuable.

Di Conway's lovely sculpture was won by Brian and Lynda Muir from Queensland. We had the draw during the afternoon. I'm sure Di will report on how much was raised through her generous gift.

Following on the pattern of the US meetings, we presented Dr Rodrigues with one of the meeting posters which all had signed, as well as a very good bottle of wine - which is the Australian cultural tradition.

I'll send some photos soon, and I hope others will also post comments, their impressions and suggestions, and photos.
#3608
Thank you to Sue Boyd for organising the meeting, to Dr Rodrigues for his generous presenting, to fellow OT patients and their partners/supporters for sharing their experiences. All of it contributed to an informative and fascinating meeting. This was the first time I have met another person with OT and I really appreciate the opportunity to meet so many who kindly shared their stories and suggestions for coping.

Also thank you to Gloria and Jeff who enabled us to connect via this website.
Blossom (Maxine)
#3609
:D Lyn Nolan out of Sydney Australia here reporting with delight the joys of attending the OT meeting on Friday 21st & Saturday 22nd June 2013.
Was my pleasure to take minutes on the Saturday but even more reinforcing to meet others with the condition and enjoy their fellowship both in formal but very relaxed forum and over meals in the welcoming environments in and around the hotel venue. Can't say my weight monitoring for my joints benefited from the delicious meals I consumed over the time but hey they were in such supportive and caring company! Diet later!
Dr Rodrigues gave so much of himself both in the medical context & in a caring beyond bedside manner. Many of the things he elaborated on in his informative presentation provoked discussion in a 2 way interaction approach and gave much thought for future action both personally and with other members of the group.
This is the first time I have ever met anyone else with the condition and it was so pleasing to link with others and feel that for once I wasn't on my own and the freak I often feel myself to be.
Especially want to thank Sue Boyd for having the foresight to arrange the meeting and the caring way she implemented it. Hope my minutes reflect that when done. Again thanks Sue.
#3610
Hello Sue,

It does sound as though your meeting was a tremendous success; job well done!

I am eager to read all about the meetings and what was learned from the physicians attending; I only wish I could have been there, but living in the U.S., in Florida, it would have been a very long trip.

Pictures provided were excellent and I feel I speak for all, we look forward to more details and more pictures.

I also wanted to say I can relate to meeting someone else with OT for the first time. The very first person I met with OT was our own "Gloria"! She is such a lovely lady and so helpful to everyone. She gives us all the courage to "go on" and learn to cope with OT.

I also attended the first meeting here in the U.S., which was held in Rochester, MN at the Mayo Clinic. This was put together by Peggy from Canada and she did such a wonderful job as well. Those of you who tackle this type of endeavor, we thank you! It's a lot of hard work; but most appreciated.

I look forward to more information and pictures.

Betty
#3613
I am now back home after a week's holiday in Sydney, then the highlight, attending the first Australia/New Zealand OT Meeting. It was great to meet up with other OTers and be able to talk about the disease with those who know. We learned many things from Dr Julian Rodriguez, with the added bonus of being able to try out his balance equipment. We appreciated his input greatly, especially as he got out of his sick bed to present to us. A special thank you to Sue Boyd for all your work in putting together such a wonderful event. It was my great pleasure to present the plaque to Sue on behalf of the OT community and to read out Gloria's special note to her. I know it was a lovely surprise for her.

It was also nice to put faces to names of all those who post on the Forum and to especially meet another couple of New Zealanders (I had already met Di Di).
Regards to you all
Lynette
#3614
Hello from Canada,
Wonderful to read the information about your first and hopefully not last OT meeting. First of all a big pat on the back to Sue Boyd who was responsible for putting this all together - I know firsthand how much work and how many details there are involved in this.

Everyone who took part will benefit greatly in this - meeting others with OT and forming friendships and support for future.

Congratulations to all and I will look fwd to seeing more pictures.

Sincerely
Peggy
#3616
Hi All,
I was so pleased to be a part of the meeting and i was lucky enough to have my family pay for my trip from Adelaide to Sydney. They knew how important it was for me to get amongst people that understand!! I, like Sue, felt teary many times as i began getting to know people. I wish i had able legs to get around to all of the people and introduce myself but felt no pressure as we all have that difficulty. We all UNDERSTOOD.
I found it most benificial to talk about our symptoms as it made it clear that all the whacky symptoms were experienced by most if not all of the group. Dr Rodrigues helped us understand why such things were happening to us and if he didn't know i'm sure now he will go and look into it.
I felt connected to the people from my facebook page as i had an idea of the difficulties they had been through and meeting with the people on my table was such a highlight to me. Beginings of wonderful friendships.
I would like to commend you all for making a huge effort to spend the day focused on our condition and getting out of our comfort zones to do this. If you are anything like me i know that it was a difficult thing to do. So THANK YOU ALL.
I wrote a few notes of the day if you wish to read you will find it here
http://www.facebook.com/#!/groups/orthostatic.tremor/
Bless you all
#3618
Another photo from Sue, a whiteboard from the meeting and a suitable teaser for the upcoming video. Looks like quite a bit of good content to discuss. The videographer is currently editing the videos. As soon as we have them I'll post a link.


Image
#3621
GO WITH THE FLOW RAFFLE
there was a drum roll ...well in my head....WE HAVE A WINNER..DR Julian pulled a number 12 out of the hat ..................Linda and Harry Muir [Queensland Australia ] Linda is Sue Boyd`s sister ...who bought 4 tickets to support Sue and OT....:) a good result !! :) grand total $2,925.00

sorry everyone else BUT A BIG THANK YOU FOR SUPPORTING ......
The gathering really was wonderful ...I am still getting my head round it all...need to rest and ponder

For me personally, just to be amongst and meeting like minded people all gravitating towards sturdy walls or seats .....[musical chairs came to mind ] the supporters there because they really cared and want to understand .... many emotional moments just watching AND HEARING how others cope ,the fellowship and warmth ... I really knew right from the onset I was in the right place at the right time and we are in this OT together ........thank you Sue and also Lyn Nolan our honorary secretary who took notes ..her smiley manner was a ray of sunshine at the end of the table ............................Didi NZ

p.s.....my adding up not good `sorry` ....re raffle ...add another $50 = $2,975.00 :)
Last edited by Di Di on Fri Jun 28, 2013 1:16 am, edited 1 time in total.
#3623
Hello Everyone,
It was my pleasure to attend this highly organised Meeting. The whole day was so informative and it was just lovely meeting fellow sufferers of O T.I will never feel like I am the only person with this annoying problem. Thank you Julian & Sue for your time & effort. The best thing was meeting all the lovely ladies & partners. I am sure we will all be friends for life. Thanks once again Sue for being such a gracious host.
Regards,
Ann
#3642
Hi all, It has taken me awhile to post after the sydney meeting as I had so much to process. I guess I have never seen myself as a person with a rare disorder, or a disabled person. I was just me, adjusting what I do, to what my body thinks it can /cant do. And I win. Always. Like you all, I have had to battle getting a diagnoses, finding a drug that has a reasonable effect on the tremor but still lets my brain work,and finding ways to strengthen /exercise my body without it affecting me too much later. I changed my job, and in the process found a retirement career I love, so thanks OT for that. I have friends with Terminal illnesses, so I thank OT for that.(not going to kill me). It was great to hear there are a multiple of drugs we can play around with (so to speak), there are toys and gadgets i can use to measure and assist and there are new friends to discuss all with - a bit like being the only one of your friends to have a baby and joining the first mothers group and discussing bowel motions for hours and loving it ?:)
I used my great- grandfathers walking stick last week, as I had never thought of using it as a "standing stick" (thanks sydney) for when I meet people in our small town in the street and stop to chat. They all thought I was making a fashion statement and as of yet I haven't corrected them!
I always say to my family & friends, OT & I are rare, special and different and that's how I live my life.I am not OT, I am not defined by my OT.I don't expect anyone to find a cure in my lifetime unless it is a wonderful sideline discovery as part of another disorder. Honestly a cure for cancer would make my day more. I hope i haven't offended anybody with my comments and I apologize if i have; (foot and mouth is a another disorder I suffer from) but if you want to know How I shop, travel, exercise with a group and just get on with it, please feel free to call and chat or reply to my post.
PS I do love the idea and use of a letter from the doctor to jump ques, brilliant.sitting on hard ground can be tiring. Not to mention ruin the pants!
It was wonderful to meet you all ,I look forward to seeing some of you again ,specially if you travel the Great Ocean road here in Victoria. We have beds!
Thanks to the wonderful Sue who bought us all together.
Looking forward to a wonderful life with wonderful new friends
Sandi
Where in the world is OT?

Hi Theresaann. I know exactly how you feel. I've h[…]

I began taking Fycompa 1 mg. on Oct 22, 2018. I cu[…]

Medication

Hello and Welcome. Have you had the chance to read[…]

Sue T

I am new to the forum, having been diagnosed this […]

2017 Omaha OT Meeting and Research