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

Moderator: admin

By admin
#3110
The following are the notes and minutes of the Omaha Meeting and Research Study from Peggy and Pat:

Hello everyone,
Before I get into the meeting I just wanted to let you know that as soon as I returned home, I sent this message along to Dr. Russotto and he replied that he really appreciated it and will pass it on. He had advised us that ALL the staff involved in the study were volunteering their time for this – amazing.
……………………………………

Please pass this message along to the appropriate people:

"On behalf of the entire OT community and their companions, we want to say thank you to all the staff, your wife and any other volunteer who participated in the OT study.

We all help our family and our friends but it takes a special person to give their time, which is so precious, to help strangers.

Thank you sincerely for this."

Peggy

Also, I want to thank Pat W. who does the minutes and does a superb job on them and also gets them out quickly – we are lucky to have her!


OT OMAHA MEETING 2012

Thursday, October 25

In her warm welcome to everyone, Gloria noted that OT is emerging from the darkness to light as we all work together to find answers.

Gloria honored Peggy for organizing this and our other OT meetings with a plaque acknowledging the many hours she has contributed behind the scenes. She presented a plaque to Dr. Diego Torres-Russotto with appreciation from the entire OT community, for his clinical research which is the focus of this meeting. A round of applause and gratitude also went to Jeff and Beth for their continuing support of the OT website.

Peggy mentioned the NORD research on OT currently underway in Australia and Paris, funded by OT contributions, and announced that we have over $17,000 in our current research fund at NORD which will be available for a second wave of research when we reach $35,000.

Peggy had emailed the participant bios to everyone prior to the meeting; if you did not receive it you can email Peggy for a copy. Also, she noted that there were a total of 23 OT people attending this meeting and it was wonderful to have a chance to meet so many people with the same issues and to make new friends among the OT community. There were a total of 46 people attending both dinners on Thursday and Friday night including companions of OT people along with Dr. Russotto, his wife, and some of his staff.

As principal investigator of the research, Dr. Torres-Russoto spoke to us following dinner, remarking that all of us together are a set of resources that none of us has, individually, at home, “We now have a forum where we can all speak the same language.”

He explained that the OT Research Team is comprised of 15 people, all of whom are volunteering their time. “The University of Nebraska Medical Center (UNMC) – Clarkson is pushing the boundaries of medical science with new breakthroughs made every day. UNMC is consistently in the top 50 neurology centers in the US with strong research programs in movement disorders. We have a clear commitment to understanding OT,” he stated.

Dr. T-R mentioned Dr. Kenneth Heilman who, 28 years ago, demonstrated that OT was a rare tremor in the legs with a very uncomfortable sensation of progressive unsteadiness, alleviated only by ambulation, leaning or sitting.

“But how do you get the doctors to believe you?” “Give the docs a break,” he smiled. He went on to discuss Professor Elio Lugaresi who correctly diagnosed Primary Orthostatic Tremor and other movement disorders by identifying the high frequency tremors that are the fastest shaking anywhere in the human body and which causes a sensation of impending fall and accompanying anxiety in generally middle aged people. “No one can make this up!”

Tremor (definition) is an oscillation of a body part usually caused by alternating contraction of agonist and antagonist muscles.

Acknowledging the frustration that we all feel, he noted that there are many different types of tremors which makes diagnosis challenging and that there are only 2,000 movement disorder specialists throughout the world. We—all of us – need to get the word out to patients and doctors alike!

Until the Omaha study began, the largest studies of OT involved 18 to 41 patients. Already more than 50 patients are in the queue for the UNMC study and a second round of evaluations will take place in 2013.

Dr. T-R explained how the evaluations work and that it is a blind study with both OT patients and “controls” with the evaluating clinicians not knowing who has OT and who does not. Each session will videotape various standing, reaching and walking trials.

“All of our data so far are based on 97 patients, 70% of whom are female, with an onset mean age of 50. But women go to the doctor more than men...” Clinical findings of OT improvement after alcohol consumption = 23%. So far, OT has been shown as mostly not familial (not inherited). Only nine people with OT, to date, have had a documented family member with OT.

He acknowledged that the diagnosis process is difficult. The most common misdiagnoses are Restless Leg Syndrome and Parkinson’s.

Is OT caused by medication? Environmental exposure? This needs to be studied further. “We have found that the frequency of the tremor is patient specific,” and that it does not appear to change with either activity or age.

EMG findings show that when walking, the tremor is only in the weight-bearing leg and when on all fours, the tremor is measured in all four limbs and that a person with OT has increased difficulty writing when standing.

Dr. T-R emphasized that OT begins in the brain. He’s a neurologist, after all. “I love you with my entire hypothalamus,” he tells his wife! He notes that OT can get worse over time, although it’s a very slow progression. After 50 years [of having OT], a patient most likely would have tremor even while sitting. He emphasized that all movement disorders become worse with stress (adrenaline) which is why alcohol and clonazepam work in some patients.

Interestingly, MRIs do not confirm OT. However, fMRIs do in some cases. The effects of medical marijuana have not been studied.

OT’s strongest association is with Parkinson’s. However, not every OT is the same. He emphasized the need for a thorough prospective study.

Regarding treatment, the first choices are still clonazepam and gabapentin (neurontin). As for generating attention, ten papers a year are published on OT while more than 1000 a year are published on Parkinson’s. However, Dr. T-R feels OT is easier to study than Parkinson’s.

He wants to establish a repository of data on OT patients including evaluation sessions in water, at zero gravity, squatting, with eyes open and closed, while supine and with applying pressure. And most important, he wants to know if the feeling of instability really means the patient is unstable.

Are patients really unstable or do they just FEEL unstable? In other words, is OT the result of the brain saying you’re unstable OR is it the shaking (OT tremors) that translates to the brain that you’re unstable? The Omaha clinical trials are trying to answer this quintessential question.

Other questions the trials will address are:

• Do OT patients have a measurable balance problem?
• Do OT patients have the same gait as normal patients?
• Do OT patients have ataxia (total or partial inability to coordinate voluntary body movements as in walking)?

Dr. T-R noted that OT seems to be a function of the cerebellum and that five patients with OT have had DBS (deep brain stimulation) and have got better. [He did not say fully recovered.] The majority were Japanese.

Clinical trials were conducted Thursday and Friday, October 25 and 26 at UNMC Clarkson Doctors Building South on 36 OT patients and controls.

Saturday, October 27, wrap up

The question was asked (again) if the tremor is the result of a fear of falling? “This is the biggest question in OT,” responded Dr. T-R, “which comes first, the hen or the egg?”

“Standing posture requires more than 100 muscles and are you thinking about activating each individual muscle? No. How can the brain do this? The brain is constantly receiving information and processing it for [proprioception] (determining where our bodies are in space, where our limbs are in relation to our bodies and what they will do next). The brain needs to know at every microsecond where each limb is. If your legs are rattling, how can the brain know what your legs are going to do?”

“In these clinical trials, we are evaluating patients for the first time, standing with feet together and eyes closed. This is difficult to do because you use your eyes to take the place of your brain to know where you are [in space] which is why walking in the dark is so difficult. This is the number one issue because the shaking doesn’t let you feel normally where you are in space.”

Dr. T-R explained that studies have shown that a normal control [person] can experience the sensation of shaking through an electric current directed at his head that produces the same feeling of instability [that a person with OT feels]. Which leads to the question: is the sensory system in the OT patient normal? “We did a number of tests and the sensory systems in the OT patients we tested are normal, he answers his own question.

“So. Are OT patients truly unstable or just feeling unstable? Is the tremor causing the instability or just the sensation of instability? Everything we feel is a process that takes place in the brain – all sensation takes place in the brain. Is it psychological? Yes, but you’re not making it up!” [Laughter!]

Q. When will we hear about the results of this clinical trial?
A. When Dr. T-R’s paper is published it will be posted on the OT website. He cannot communicate results that have not been published. All research papers must be reviewed by peers (experts in the field) who edit the paper before it is published in a scientific journal.

He went on to pose the question, “can we change or re-train OT patients to use all their senses beyond their eyes to feel as if they are stable?” Certainly yoga increases the awareness of the body in space. Noting that one-third of the brain deals with vision, he expressed that a study needs to be done on OT in people who are blind. “We need more doctors to study this!”

Dr. T-R explained that it required three years of planning to be able to initiate the Omaha OT study. It took two years and 100 patients just to develop and test the results of the audiograms of the finger-rubbing technique. And, he originally had 500 questions to ask each patient, but streamlined it to 300 questions!

Q. Would taking DNA samples from all of us show some commonality?
A. There is no single gene for stability or mobility – those actions require millions of genes.

“One of the things measured in this study was the distance between your feet when you stood up. And all of you had a wide stance. The walking distance [between your feet], however, was less than 10 mm and this is normal!”

He reiterated that there are only nine known patients [anywhere] with a family history of OT. He noted that the UNMC has a genetic center, “so we are thinking about a DNA comparison study.” We need to establish an international repository of OT data available to all scientists and doctors for study.

Q. Should the fear/panic issue be one of the first to be studied?
A. Fear can be fixed. We have been trying to fix the shaking, but maybe we need to work on the fear and anxiety.

Q. How do you measure the amount of panic?
A. That is a question for a psychiatrist but it should be studied.

Q. Would testing in bare feet reveal the curling of toes?
A. When asked who curled their toes when standing, every OT hand went up!

Q. Do OT patients feel worse going down an incline than going up an incline?
A. Again, a show of hands and all indicated yes.

Q. How could the tests we did be blind? Couldn’t the evaluators [easily] tell the difference between the OT patients and the ‘controls’?
A. Those conducting the tests will not be reviewing the video tapes. And by the way, none of the ‘controls’ were normal! There is no such thing as a normal neurological exam.

Q. How can we measure the progress of OT, for example, at home? On a scale of 1-10?
A. We do not have a biological marker for OT so a severity scale would be difficult to develop. Also, the frequency of the tremor is individual to each person and does not change or become higher – as far as we know. It has not been studied.

One of the objectives of this study is to develop a severity scale and a true diagnostic criteria. Right now you need two symptoms. You have to have an EMG (electrode) test.

Q. What about oxygen therapy?
A. It hasn’t been studied.

Q. Ozone therapy?
A. Dr. T-R has an interest in this. However it costs $100,000 for a hyperbaric test. He cited a patient with a TBI (traumatic brain injury) who had 120 hyperbaric ozone treatments which did improve significantly his memory, walking and other functions.

There have been studies on stimulating the back and limbs but they do not produce OT symptoms. Only stimulating the brains of normal people can produce the OT sensation.

Advice to all doctors, “Listen to the mother. Listen to the wife. Believe in the families.”

Q. Do tremors decrease with better muscle tone?
A. It hasn’t been studied. OT people are very “active” for their age group and keeping active is helpful.

Q. What happens next?
A. Dr. T-R already has additional questions to ask the second group to be tested in 2013. He will also forward those questions to all of us so the studies remain consistent.
…………………
A small committee is beginning to plan for OT Meeting IV early in 2014. As soon as we have some details in place, an announcement will be made on the Forum as to date and location.

link to read the PDF of the research description
By grandmam
#3115
Thank you to everyone that worked so hard to make the OT meeting a success. It was so good to meet others with OT and I still chuckle on how many "wall flowers" we are. Noone in my cirlce of friends can understand why I need a wall for support. Was home just a few days and got a call from my movement specialist whe wants me to do DBS. I am very hesitant to do this because of no history of this being an answer to OT. My prayers and thoughts were on this suggested plan and then yesterday my decision was made for me. I am having to go in for more testing on my vision concerns. DBS is on the far burner now. Chris, our interview for the newspaper was great. I was surprised to see the video of myself, but have sent it to family, and it helps their understanding of OT
By admin
#3119
Gloria has asked that I post this message. She is safe and well, but without electricity and internet due to hurricane Sandy. She is looking forward to posting once she is back online, about the wonderful meeting and research in Omaha.
#3121
Hello Gloria (when you can eventually get the power and internet back on!)
I'm so sorry to know that you are still being affected by "Sandy". Hopefully you will have some power back on soon. Living on our remote Island, we get used to having power cuts normally caused by the weather (winds) - not as long as you are experiencing, of course. You do learn to be very resourceful. We did lose all contact with the rest of the world for two days a few years back, the only connections being a couple of satellite phones that the policeman had, so I do know how you will be feeling.
Stay safe and warm.
Regards, Lynette
#3122
Thank you to all who gave us such a wonderful opportunity to participate in this very interesting event. I learned so much; not just from the speakers but to others of you who had so much to share. It was also gratifying to finally meet others who also had this "disease". I have had OT or signs of it for over 30 years and until now had never met anyone with the same symptoms having been finally diagnosed three years ago. And that was only because of Gloria's article and this forum.
Glad to hear that Gloria made it home. I wondered if she was even to make her flight connections.
We returned to our home in Sioux Falls, SD where we packed up and made our long road trip to our winter home in sunny and warm AZ.
Thanks again to all for all your work. I appreciate the full and complete report that was submitted here. Good work. Let's hope we get help.
Janet
#3123
Dear Peggy and Pat,
Thank you so much for your detailed minutes. I have printed them to take to my neurologist for my upcoming appointment. Our OT community has made amazing strides in only a few years. I feel so good about being connected to you all and look forward to making huge advances in the future! Congratulations everyone.
Helen
#3356
I have such great memories of our meeting/research in Omaha last year and I thought you might like to know that I have submitted an application from the OT Community to the - 2013 Rare Disease Day - Researcher Hall of Fame for Dr Diego Torres-Russotto:

http://rarediseaseday.us/meet-the-commu ... l-of-fame/

(scroll down on the Hall of Fame page to see Dr Torres's entry)

The application included the following:
Dr Diego Torres-Russotto is both caring and compassionate, and has worked with tireless dedication to understand the mystery of Orthostatic Tremor. This past year, the first part of the largest study on OT began in Omaha, Nebraska. A team of 15 people from the University of Nebraska Medical Center headed by Dr. Torres volunteered their time to study a group of OT patients that traveled to UNMC. For his dedication to research this rare disorder, we are all extremely grateful to Dr. Torres.
I am sure that there are many researchers that will be submitted, but Dr Torres will always be in our Hall of Fame.

all the best,

Gloria
#3391
Very pleased to read about Gloria nominating Dr. Russotto for the NORD "Hall of Fame". I copied the article and sent it to Dr. Russotto and he just replied and was extremely pleased.

Yes, he certainly is in "our Hall of Fame".

Good for you Gloria!

Peggy
#3399
Thank you Jeff,

You are so good about following up on things; and I want to say ~ for all of us on this website ~ thank you for all that you do.

I don't think you receive enough recognition for all that you do, and many may not know you encouraged Gloria to put "her story" on the web.

Look what the two of you have done over the past 12 + years; how many people you have helped and how many people now write about their "adventures" with OT.

Thank you!

Betty
#3402
Thanks Betty,

You are certainly the goodwill ambassador of the forum!

Every post, reply, or story helps someone, and that is a great thing! So, I hope you don't mind but I'll take the opportunity to spread around your thank you to the entire OT community : )

best to you and Paul.
#3403
Jeff,

Thank you for your kind words; they are from the heart.

You have my permission to post anything you feel would be helpful to those who have found this wonderful site.

You know how special Gloria is to me and having met you and Beth; you fall into that same category ~ very special people and a very special family.

Please give my best to Beth,
Betty
#3405
There are not enough positive words to describe Jeff. Most people know he does a lot for us - but he does a lot behind the scenes also that I have discovered that people would not be aware of.

We are very lucky indeed to have him onboard!!

Peggy
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