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#4383
Hello everyone!! My husband Tim and I have finally made it back home to British Columbia, Canada. All in all we drove nearly seven thousand miles on our road trip. After our wonderful four days in Omaha we continued on to South Carolina to visit my brother in his new home. The road trip was spectacular....wonderful weather, gorgeous scenery and so many interesting people.
Our time in Omaha was definitely a highlight of the whole trip. It was so great to reconnect with so many friends we had made two years ago as well as make so many more new ones. We really enjoyed spending time together and sharing lots of ideas. It was wonderful to be part of the study and spend some quality time with Dr. Torres and his staff. Thank you so much to Peggy for all her hard work in organizing this superb week. We really do appreciate everything that you did. Tim and I found it very hard to say good-bye to everyone and look forward to getting together again at a later date. Take care and best wishes to you all. Chris Forty :)
#4385
There are no adequate words to express what this experience meant to me. Like many others there, it was my first meeting and it felt like home. Having lived with this condition for so many years and feeling so isolated, meeting all of you just like me was amazing. You Understood!!!!! It is so difficult to explain this disease to others. I gained so much knowledge and made friends who I intend on keeping in touch with.
Dr. Torres was wonderful! Thank you Peggy! Thanks also to Jeff who maintains this website as well as the Facebook page.

Last week I was at a college football game in Atlanta when a thunderstorm came over the stadium. We were forced to evacuate the stands and move into the concorse areas. There were a LOT of people and, as you can imagine, very few places to sit. I found a safe place to prop as I am accustomed to doing. Soon I need to visit the ladies room. While in the ladies room, I observed a lady who went into one of the stalls and sat on the toilet...she was not using....just sat. She seemed in distress so I asked, "Are you OK?". She replied, " I just had to find a place to sit. My legs won't let me stand up a second longer." I proceeded to tell her that she probably had leg tremors called Orthostatic Tremor. I added that she should tell her doctor about it and that IT had a name. Of course I told her that I had it too.
#4387
Hi! Debbie: So happy you where able to join us in Omaha and were able to establish friendships with a number of other OT people. Also your interesting story about meeting the gal in the Ladies Room who described her symtoms as those of OT. You gave her good advise but here is another use and reason to carry OT Travel/ID Cards with us. Click on the link below. I carry these cards at all times because OT is very hard for people to understand and these are of great help. Gloria

http://www.orthostatictremor.org/ot-travel-card.html
#4389
Thank you Gloria! Yes, the travel card is wonderful and so important. Your suggestion has prompted me to print several more for such occasions. This connection to the forum has proved invaluable to me as have the friends that I made by making the trip to Omaha.

thank you!
Debbie from Georgia
#4413
Hi all

very nice pictures
Sounds like all well very well at the meeting.
Wish i could have been there.
I miss not meeting everyone.
Hopefully there will be other times.
My tremors have increased. But i get around and do lots of things in
different ways.
Regards to all
Stella
#4426
Stella: It was you that was missed because you have been a longtime member and friend. Sorry that other health issues had prevented you from coming to the Omaha Meeting. However your keeping in touch as we move forward in our quest to know more about this nasty OT is good. Thanks, Gloria
#4428
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As a follow up to the discussion on the OT cards at the Omaha meeting, we have created cards that are available to order from the website CafePress:


Cafepress website is now offering the OT card design on their website and you can order OT cards directly from them.

Hopefully you will find this a convenient and economical way to order cards, but you can always download the files from the link below and print your own.

IMPORTANT - CafePress does offer nice products and their customer service has been very responsive to my questions. But, I do not receive any profits or incentives from Cafepress. If you have any issues or questions you will need to contact Cafepress for assistance.

I have turned off any markup or commissions so hopefully the price will remain low. Currently it appears to be $0.17 per card (US). As a test I ordered the minimum amount of 24 cards to view the quality and the shipping was free. I chose the glossy cards and the quality was very good. I received my order in 5 days. The total for my order was $4.08 which included the free shipping (this price may change). The photo below is of the order that I received.

The least expensive method would be for anyone to download the files from the OT website, but if you don't have a color printer this may be a good option.

Click on the following link to view and order the card from CafePress:
http://bit.ly/OT_cardsOrder

Click on the following link to download the files and print your own cards:
http://bit.ly/OT-travelCard

In the upper right of the CafePress website you can choose other currencies: AUD/CAD/GBP/EUR/USD. I believe that the cards are printed in the US. I ordered and received the cards within the US, so check any shipping costs if ordering from outside of the US.

If you find any other services to print these cards please let everyone know.

Image
#4530
Well, here I am, 'old better late than never' adding my thoughts on Dr. Torres study on OT. I am truly grateful for Dr. Torres and his staff's interest and dedication to OT because this meeting provided a lot of firsts for me. Most importantly, was that after over at least 25 yrs. of visiting numerous neurologists and 4 movement specialists, I finally had my tremor speed measured to confirm the diagnosis of OT. In the past, I'd had two EMG's done with me lying down, and one Surface EMG with the electrode on my back. The Surface EMG was done by a neurologist that I drove 3 hrs. each way to see, because he claimed to be knowledgeable about OT. A few other exciting 'firsts' for me were, to meet two friendly and knowledgeable doctors who really did understand OT....Dr. Torres and Dr. Bhatti. It was such a pleasure to finally meet not one, but two doctors who not only knew what OT was, but who also had an interest in what I had to say and who care enough to donate so much of their valuable time in an attempt to find answers to such a rare disease. Prior to this, I had never been to a doctor who had even seen another OT patient, and most of those that I had seen had absolutely no idea what OT was. It was also very beneficial for me to meet other OT sufferers to compare symptoms, ideas and just to experience the comradery of everyone. I want to thank everyone who was involved in doing all the work involved to put on such a successful program because I know it entailed weeks of planning for a number of people so that everything went so smoothly. I am grateful for all of you, along with Dr. Torres and his staff, and can't wait for our next get-together!

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