News from the meeting and study in Omaha NE, with DR. TORRES-RUSSOTTO

Moderator: admin

Well, the first event of the OT Conference & Study is in the history books and in the judgement of this writer, the first night was a resounding success.

Thursday night everyone gathered at the Mexican restuarant for drinks, food, and conversation along with Doctor Diego's entertaining and informative presentation. With his laptop computer hooked up to a large screen, everyone was able to see and hear interesting and even amazing information about the world of tremors in general and about Orthostatic Tremors in particular.

The doctor exhibited a wonderful computer-side manner as he alternately joked and informed the crowd of card-carrying OT sufferers along with their "normal" companions about his area of medical expertise. He managed to combine a delightful personality with an informed and caring but scientific explanation of the subtleties of the differences between various types of movement disorders.

As I listened to the presentation as an 18 year veteran of the OT conflict, I was struck by the thought that along with the new things I was learning this night about this disorder, I had the strange feeling of being comforted by the recurring sense of being in a crowd of about 50 people who were also comprehending the isolation of this lonely disease while having this shared experience of being surrounded by other people who "get it". It was kind of a nice validating moment.

We were also enlightened to have medical confirmation that we don't have a "condition", but rather a disease. And many were also delighted to have it confirmed to us that our alleged problem was not just "in our head", but it was in our brain. Scary, but affirming.

So now, with some 12 people's tests already completed on Thursday and the rest of us due to be mounted on slides and put under the microscope today on Friday, we are looking forward to a second social event in the form of another dinner tonight followed by a promised winding up report to all of us on Saturday morning.

I hope others in attendance will add their own impressions as this conference/study continues.

Sincerely, your cub reporter,
Rich Young
Hi Rich

Great to get info on the Conference and be kept up to date - living at the other side of the Atlantic in Ireland I sometimes got the impression that the site was just for those liveing in the US of Canada but now so thankful to you for sharing this news - hopefully something positive will come out of it for all

Follow up. Day 2. The Lonely Disease no more?:

To Catherine in Ireland, MaureenB in Southport, UK, and Di Di in Wellington, NZ, we wish you were here as well.
We are having a huge amount of fun and there is plenty of fun left over for all of you.

And now on to today's report. There's lots going on and I haven't seen it all but I will tell you what I can.

Ah, where to begin? Each of us guinea pigs were given a place to be and the time to be there. This was very well arranged with aerial maps and complete directions given to each person. Somebody is really organized.

The University of Nebraska Medical Center is a HUGE complex covering at least 1/4th of the state of Nebraska. It is so big that there is barely any room left in this state to grow corn. The entire southeast corner of Nebraska appears to be nothing but a vast sprawling series of medical buildings where they perform experiments on unsuspecting OT volunteers.

Staff that I met included Dr. Danish (that's his first name) who I had a wonderful visit with, Dr.Diego's wife Ingrid, who was my delightful guide to the hidden testing chamber and then there was Ms. Lori who was my task master for the series of kindergarten activities that tested not only my increasingly limited physical abilities but who also saw to my efforts being recorded on video tape. She assured me that the recording would not show up on YouTube. That's all I need at my age - to go viral on a video. My long delayed 15 minutes of fame that Andy Warhol promised me and I never got.

Arrivees (my spell checker says that is not a real word) at the Department of  Neurological Sciences are enticed with a refrigerator filled with juice boxes, and a counter loaded with various baked goodies including macadamia nut and chocolate chip cookies along with fresh fruit and other culinary temptations. Once we volunteer's defenses were lowered, he/she was called from the waiting room to the nether regions of the building where we were subjected to various tests.

These tests were actually pretty simple and even I was given a passing grade. I will not fully embarrass myself here by telling you what they consisted of, but I will tell you that almost any six year child could pass them easily, and involved such complicated tasks as standing up, sitting down, touching our fingers together and playing patty-cake. Walking down a corridor, looking over one's shoulder, climbing some stairs and walking backwards were all required. Of course, a person, such as myself, who now when asked his age has replaced the word "years" with the word "decades" in order to keep the answer to a reasonable number, was a little more challenged than a six year old would be. But the staff personnel were so gracious and kind, that it all seemed innocent and non-threatening.

First we were told it would take four hours, then it was going to be two hours and we ended up being done in less then one hour. Somebody who planned this exercise has studied how to placate and please volunteers. Obviously I am a very fast study and am one of several of the more advanced guinea pigs being tested. I am looking forward to taking on a maze next time involving pieces of cheddar cheese.

This OT volunteer stuff is a piece of cake.

These OT people sure do like to eat. Tonight's meet 'n greet was at Dr. Diego's favorite restaurant named Espana. It was some distance from the hotel where most people were staying and so there was a pilgrimage from the hotel to the feeding trough. Peggy (of Canada) had everybody mixed up to be seated by someone other than their spouse, so instead of husbands and wives sitting mute next to each other, there were many lively conversations going on and we had that restaurant buzzing. Our website guru Jeff was so kind to come to my table and introduce himself to me. I made sure that he knew how much we are indebted to him for the work he has done and is doing in providing this website as a place for us to meet and share information.

I understand these people are getting together to eat again tomorrow. Sheeze!

While I do not have personal knowledge of this factoid, I was told by one of Dr. Diego's staffers that a television camera crew was at the testing facilities this morning and the resulting footage was telecast this evening at 6:00 P.M. here in Omaha. Those of you who were on the news could probably better fill us in on that experience. Maybe we could even snag a link to see that footage online. Anyone?

Also, I am told that the print media was there and that article will appear in one of the Omaha newspapers tomorrow. Maybe someone here with knowledge of those facts could fill us in so that all of us can have a link to go check out the article online.

And then there is Erik White of CBC (Canadian Broadcasting Corporation) who is here today and tomorrow who has promised us full Canadian national coverage.

All of this should help us bring what I have called the Lonely Disease out of obscurity and into the light of public knowledge and understanding.

Sincerely, your cub reporter,
Rich Young


KETV ABC Link to news article from KETV ABC Omaha

OMAHA WORLD HERALD Living Well article on UNMC OT study

Hello Rich,

Thank you so much for your EXCELLENT report of the meeting in Omaha. I have read your reports for both days and even the links provided.

I do hope someone will be able to get a link so those of us who were unable to attend will be able to see the video as well.

I attended the very first meeting in Rochester at the Mayo Clinic, but was unable to participate in this study because I also have vertigo, and was not accepted for the study. I was so unhappy I had to miss seeing friends I have met through the years and meeting new ones.

Perhaps the next meeting....

I will look forward to more reporting and perhaps some pictures of those attending.

Also, I would like to give a very special THANK YOU to Jeff. I have met him and his wife Beth; what a lovely couple, and without Jeff, this site wouldn't have been available for all of us to communicate.

Again, thank you,

Hello, it's me again!

I forgot to ask if there is any possiblity of getting a link to the article which may appear in the Omaha newspaper tomorrow. Perhaps someone could add it to this site.

Also, regarding Erik White of CBC and the coverage he is providing....might there be a link so we might see that.

Peggy, I feel since this is the CBC, you had a hand in this, so perhaps you can get this online as well.

Thank you, Peggy, for all the work you have done to make this happen. So sorry I was unable to attend, but I was there in spirit.

Follow up redux. Day 3. Q & A Session by Dr. Diego Torres-Russotto:

This years attendees of the Orthostatic Tremor Conference in Omaha, Nebraska gathered on this final day at the Cantina Laredo restaurant at 10:30 AM on Saturday 27 October 2012.

The purpose? To hear a summation of the two days of testing at the University of Nebraska Medical Center along with the exciting prospect of getting every question answered you have ever had about OT.

Well, not really.

In fact, the good doctor made it clear to the gathering that, in many ways, we are really just getting started. But that's all good because we are, in fact, ... started. And once again, we were treated to a clear explanation of the subtleties and science of tremors of the orthostatic variety and what is known and what is not known about the disorder.

For 1 1/2 hours, Dr. Diego entertained and informed as he directly answered live questions from the group. Such profound questions as to which came first - the hen or the egg and its relationship to OT. It was stimulating. It was fun. And it was informative.

Personally, I was delighted to hear concise and carefully crafted answers to a variety of questions which were being posed. Questions posed not by medical professionals, but by those of us who are wrestling (literally) with this disease. I know that I speak for many there who felt validation and empowerment at being given factual answers to questions that have plagued many of us for as much as two decades and even longer.

Are there more questions than there are answers about Orthostatic Tremors at this point? Without question, but the sense in the room at the end of this three days was that we may finally be on the road to getting an explanation of what our bodies have been doing to us, to our lives, to our families and to our social interactions for a very long time.

I am grateful for the commitment, dedication and passion of Dr. Diego Torres-Russotto, his wife, his assistants and the supporting staff of the research study in Orthostatic Tremors at the Department of Neurological Sciences and for the kindness and care shown to each of us who were participants in this part of the study this year.

And I am also grateful to Gloria Nelson and those who have supported her in her quest to help herself and all of us in this effort to find answers to the perplexing questions posed by one's brain oscillations and the confusing signals being sent and received by the leg muscles.

May God bless each of you in your struggles to live successfully with the challenges you have been given and may you find the blessings designed into those challenges.

Sincerely, your plucky cub reporter,
Rich Young
Thank you so much for your reporting of the study - I look forward to more information as the Doctor and his support staff put together what they have found out over the past three days. As I make preparations to go and live in a warmer part of New Zealand because of the pain I am suffering in my legs, leaving my husband to his job here on the Island, I feel a little more reassured that there is finally a "beginning" to what this disease is doing to us and how better to live with it.

Once again thank you - I so enjoyed your "cub" reporting. You are most welcome to continue.
Lynette from Chatham Islands, New Zealand
Warmest thanks for reports of the OT Conference!
I'm very curious as to what questions were asked - is there any chance to get some input from the Q&A session from anyone present?

Greetings from Stockholm, Sweden - we are indeed an international group!!
Hi Rich,

I think you missed a calling in the news industry! Thank you for the great reporting, and most importantly it was really nice to meet you and everyone at the meeting.

Many thanks to everyone involved in the event, especially Peggy who was the organizational guru.

Dr Torres-Russotto was incredibly informative, entertaining and inspiring. Thanks also to Dr Danish Bhatti and the entire team at UNMC ( sorry - I am really bad at remembering names )

Thanks also, to all of the spouses, sisters, brothers, sons, daughters and friends whom we met and to everyone that offers support and understanding but were not able to come along.

We almost stayed the week in Omaha due to the storm on the east coast, but with a bit of luck we arrived last night. Gloria, Beth and I are back at home.

I hope that everyone's journey home was safe, enjoyed the experience and new friends.

best regards

jeff and beth
Good morning all,

Rich, I must agree with Jeff, you have done such an excellent job reporting, perhaps you DID miss your calling. I look forward to more information when you can fill us in. Also, pictures would be great.

As "golfnut" wrote: "I'm very curious as to what questions were asked - is there any chance to get some input from the Q&A session from anyone present?"

I would also like to know some of the questions and answers given. For those of us who were unable to attend, you are our eyes and ears.

Jeff, thanks for the update on your safe arrival back home; so happy to hear Gloria, Beth and you arrived last night. We are all watching this horrific storm as it approaches your area. We will have you in our thoughts and prayers.

Be safe!
A couple quick photos of the meeting. Over the next couple weeks there should be more resources to post from the meeting including photos from Tim F. who took many great photos. And as everyone gets settled back home they can add their thoughts and comments about the meeting.


Thank you, thank you, thank you, for the pictures you posted. Of course I recognized Gloria and Peggy and, I think a few others. Since the pictures were a bit small, and so many people there, I didn't recognize all.

I will look forward to more people reporting and other pictures posted.

Take care, be safe!
Hi Rich and All:
It was so great to meet you in person, having known you since 2004 as an OT friend thru
the site and now finding that you have the reporting skills of the” best” is wonderful. Thank you for your help!!!!!

My pre-thoughts of going to the meeting/study in Omaha was the normal excitement of soon seeing and being with wonderful OT friends and that was true, however that reaction turned into a WOW! assessment . As soon as Beth& Jeff and I walked into the lobby of our hotel, I saw a number of familiar faces and new with their OT name tags on and suddenly knew again “ this is my world”. The result of the whole Omaha experience was so rewarding thanks to Peggy’s excellent organization. Meeting Dr. Torres-Russotto, his staff,listening to his presentation and participation in the study gave me the feeling of great hope of OT going forward to a new place in the movement disorder science. There will be more reporting of our event from Pat Whitney who took copious notes.

Sorry but there are so many more people that I would like to acknowledge but Hurricane Sandy will be bearing down on the New Jersey and New York area soon, airports are closed and winds plus rain are predicted to go up 90 mph.

To be continued when things calm down, Gloria
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