Moderator: admin

By Lake of the Woods
#1016
Hello everyone,
The meeting was a HUGE success; the following are some of my highlights:

Meeting Gloria and her wonderful son Jeff

When I first started thinking about planning this meeting, something that was important to me was to meet this wonderful woman Gloria and thank her personally for all she has done. So, I sent in the notice to the forum about the idea of the meeting and I was thinking at the time that I hope it wouldn't get buried in all the other notices as I was giving people a few months to think about attending etc. Before I knew it I received an email from "admin" advising that they could put a special notice on the home page about the meeting so everyone logging into the website would immediately read about this meeting - wonderful! Then a few emails went back and forth between myself and "admin" asking for help as I wanted to separate topics regarding the meeting ie. travel, accommodation and doctor's presentation. I then found out that this "admin" was none other than Gloria's son, Jeff and he is the one behind the scenes doing all the work on the website. I couldn't have got better service from a paid employee.

Sometimes it seemed that Jeff knew what I wanted before I did. I was really intrigued then, because here was a man who knew what a woman was thinking and he got the job done before I even asked for it...I was really anxious to travel to America then...because Canadian men are just not like that!

I did try and acknowledge all the Gloria and Jeff are doing at the meeting but I am not particularily good at public speaking and it was quite emotional also for me talking to them so I wanted to tell them now how grateful we are for all that they have done and are doing. Jeff does an awful lot of work on the website keeping everything running smoothly. Gloria is always doing her thing, helping everyone, giving suggestions and support.

We are very, very fortunate to have both of them and I just wanted to say "thank you" !

Meeting all the OT people

This was truly wonderful! It was an immediate comfort to be surrounded by people with the same problems as you have. Now that I can put a face to the name I feel that I have a support group of friends who truly understand. You really had to be there to experience the rapport, understanding and kinship that took place. If you were lucky enough to sit beside Helen you also had lots of laughs with her hilarious stories. I am still trying to decide if "she was in the right group" or if "she missed her stop"......just kidding.

Round Table Discussion on Creating a Non-Profit

Pat Whitney gave an excellent presentation outlining information on this and we will hear more from her on it. We are lucky to have her!

Listing Your Location

Our goal is to have people list their location when they register - this will help create support groups.

How do we get the word out to other Neurologists about our Disease?

I did talk to Dr. Burnette at the Mayo Clinic on the Friday before the meeting about this. She advised that the best way in her opinion was: "When clinical studies on OT are completed a paper is published and this is usually reported in a reputable magazine and this is the way Neurologists and other Doctors learn about it"

I asked Dr. Burnette if she would email me when the clinical study that I took part in in 2006 was completed and published and she said she would. She said she had just talked to the doctor who was in charge of that study and it will be wrapped up in the very near future. I will then advise the forum and they can then access this paper to show to their own doctor and/or read themselves.

I also took part in a clinical study that Dr. Burnette is presently conducting at Mayo Clinic on that day. They hooked me up with 64 electrodes on my head, some on my arms and legs and then studied and recorded the information when I stood and did other actions. I will let you know when this study is completed - they were checking for necks tremors etc.

Dr. Matsumoto's presentation

Dr. Matsumoto started the presentation by working the way around the room; he wanted to have each OT person tell about who they were and what was their experience with OT. He told us we could ask as many questions as we wished and he answered them all as best he could. We all appreciated his patience, caring and knowledge. The video will be available in the near future on the website. He is truly a "gem"!

He also talked about the importance of us getting together as a group. He implied that the greater the number, the greater impression we make to the medical community that "we are out there".

I am very grateful to everyone who supported this meeting for that reason.

Peggy
By Betty
#1029
Dear Peggy,

Your report on the meeting is excellent! I think you covered everything so well; those who were unable to attend will feel they were there as well.

I also want to thank you for all your hard work in putting this meeting together. I know Gloria, Jeff, Beth and Pat were very helpful with their special talents; to all of you ~ a BIG THANK YOU!

Betty 8)

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