Reports from the Omaha Meeting and Research 2014

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Re: Reports from the Omaha Meeting and Research 2014

Post by Sueb »

From Sue Boyd
Dr Torres-Russotto’s talk to the group, Thursday 25 September
Summary of Questions and Answers
(Dr Russotto took questions throughout his presentation, so these are selective notes)

Q: When will we see the results of this research?
A: It will take time for the team to study the data collected, and then to write it all up, and check that it is right, and prepare it for publication, but when that is all done, we will give you the report. Maybe it will all be ready to be released in International OT September Month next year.

Q: will we get individual reports, on our evaluations?
A: No, that will not be possible. We are not allowed to do that.

Q. Has any study been done on whether OT is genetic in origin?
A. Nothing has yet been well done. The next stage of the study may be to collect blood from patients to look for genetically transferred causes. Some work is being done in other medical research centres so there may the opportunity for collaboration. There has been a known case of identical twins both with OT.

Q. Some people have leg jerks in their sleep, and painful legs. Is this part of OT?
A. It is probably due to something else, other than OT.

Q. Head injuries were not included in the medical history questionnaire. Could this be important information?
A. It might be something to be looked at in future.

Q. Some OT patients suffer ataxia (clumsiness in movement). Is this due to OT?
A. This has not yet been scientifically assessed. (prior to this study)

Q. Is tinnitus connected with OT? (three people in the room signaled that they has tinnitus)
A. This is yet to be assessed

Q: What are the treatment options?
A: There are a number of drugs which can be prescribed, and each patient’s needs are particular.
Keppra - Has not been found to be good
Gabapentin - Has had four patient trials. Has fewer side effects and can be used in combination with other drugs
Clonazapam – some patients experience a range of problems, and finding the right dosage is important
There are also other drugs which have been tolerated.
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Re: Reports from the Omaha Meeting and Research 2014

Post by raz345 »

We (Anna Belle and myself) finally reached home from Omaha only to leave a beautiful 80+ degrees F. to 40 degrees F. (+ 4 C.) this morning - a bit of a shocker! After a long day spent in airports, airplanes and road travel, we had a good night's sleep and are ready to tackle what life gives us once again.
This was a wonderful and enlightening experience of meeting new friends and encountering a better understanding of this debilitating condition. We want to thank the organizers, the hosts, the presenters and instructors, technical advisors, donators, and most of all Dr. Torres and his medical team for all their unrelenting time and energy put into an event such as this. They deserve a "standing ovation" and a well-deserved rest before the real work begins of organizing and analyzing the data into some, hopefully, positive results to make this disabling condition more tolerable. I trust they will take some time to "take a deep breath".
I came away with some new ideas to deal with my situation and do fully intend to follow up on them. What wonders many "heads" can do!
We were thrilled to be able to meet with Dr. Torres and discuss the procedures that Anna Belle does (massage therapy, and more). He was very receptive to her ideas and she was so pleased. Her mind has not stopped working since this conversation. We are really looking forward to preparing a report/study for him. And that it will be of some benefit.
Last, I want to thank all of my OT friends. It was such a thrill to meet all of you. Unfortunately we did not arrive soon enough to meet some of you but maybe in another session. We had a truly wonderful time with many laughs and good times. Hopefully life will improve for all of us and we will all be able to meet it head on. Good Luck, everyone!
Roxy Bauman and Anna Belle Friesen.
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Re: Reports from the Omaha Meeting and Research 2014

Post by admin »

A question has surfaced about a research study with 158 OT participants

This may refer to a review by Mayo Clinic or another case review, and indeed a very important effort, but this was a retrospective case review. Dr Matsumoto mentioned this information at the OT Meeting in 2008 LINK , but I am not sure if this was published. A retrospective study uses existing data that has often been recorded for reasons other than research, for example: prior records from various doctors and patients. The challenge is that data is generally not collected uniformly, and therefore not a controlled environment or yielding consistent data. Most of the existing papers that include large numbers of OT patients fall into this category.

The research study in which many of you participated in Omaha is a prospective research study which gathered participants in a controlled environment with specific tests, questions and objectives. It's easy to see that this is an entirely different process than reviewing historical patient records. It would be misleading to not discuss the difference in the approach of a prospective research study as compared to a case review and important to anyone reading a report, to know the difference.

Interesting to note... at the Omaha meeting we heard that Dr Bhatti, spent the last year reviewing every patient review of 165 papers, 360 patients. Which will make Dr Bhatti's report the largest case review. The numbers aren't important because you win if you get the largest group, they are important because as the size of the patient group increases, the validity of the results grow. That is why numbers do make a difference, and why it's important to understand how research falls into different categories.

Any research into OT should be applauded and Dr Torres mentioned several research studies around the world that were very interesting. The search for a medical breakthrough is not a linear process. Consider the amount of money that has been invested into other non-rare diseases. It is the continued pursuit of information that is important.
Lake of the Woods
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Re: Reports from the Omaha Meeting and Research 2014

Post by Lake of the Woods »

Thank you Jeff for explaining the difference of these studies. It is important for people to understand this.

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Re: Reports from the Omaha Meeting and Research 2014

Post by admin »

Mark your calendar for September 2015!

Awareness grows by participation and sharing. And all groups will have the opportunity to join hands to mark the first annual Orthostatic Tremor Month in September of 2015. Be creative, find ways to spread the word, plan a meeting, or a fundraiser for research.

This is an event for every individual and every group. The meeting in Omaha served as a perfect opportunity to propose the idea to a large group. This year the NTF POT group meeting was in September and 2014 included other new meetings around the world….. that is something to applaud for the OT worldwide community.

Awareness grows with many voices.

read more about the Orthostatic Tremor Awareness Month

If you speak any other language and could translate the phrase below I will post the images for anyone to use. Help build awareness of OT/TOP/POT
September is Orthostatic Tremor Awareness Month
Together we can stand up to OT

Thank you! Merci, Dank u zeer, Gracias, Danke, Grazie !

(if the translation is not exact, it's OK too, anything close with a similar message is good, and creates an opportunity for everyone around the world to join together next September to support OT awareness)

Lake of the Woods
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Re: Reports from the Omaha Meeting and Research 2014

Post by Lake of the Woods »

This is terrific Jeff - thank you to you and Sue Boyd for putting this together.
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Re: Reports from the Omaha Meeting and Research 2014

Post by Janevece »

It was so wonderful to meet every one in Omaha. What a great group of people. Thanks to all the organizers and researchers who gave so much of their time and talents.

Nancy and I gave 2 presentations on our experience with our prisms. Thanks to all who attended.
This is a copy of my notes. A few folks asked if I would put them on the site for all to read. I hope they help.

My name is Jane Vece.
I live with my husband of 34 years in Clinton, Ct. I have 3 grown children and two grandchildren. I am now 57.

I was born with strabismus (also known as lazy eye) and have had resulting double vision my whole life. I had 2 surgeries to correct the cosmetic effects of this condition at ages 2 and again at age 17. The surgeries did not correct my vision.

I herniated two discs in my low back in my 20’s. I was advised that surgery was an option to decrease pain and sciatic symptoms, but declined surgery at that time.
I was diagnosed with adult onset scoliosis, which is a curvature of the spine in my 40’s.

I now realize that all these conditions may be connected.

I began my journey with OT in my early 30’s. I used to love to paint and wall paper around my own house and noticed that I was shaking while standing on the ladder. Symptoms slowly, gradually escalated over the years. I struggled like many of us wondering what was wrong with me. I thought my bad back issues were the problem. I was evaluated for MS which was ruled out at the time, and was told my tremors were psychological in origin.

I was diagnosed with OT in 2006 by a neurologist at Yale. In 2012 increasing and overwhelming fatigue and already discovered lesions on my brain led to revisit an MS diagnosis. I received treatment for MS for about 6 months. MS was definitely ruled out at the Mayo Clinic in the spring of 2013. There, OT was reconfirmed with examination and an EMG.

I am a BSN RN. I worked in the cardiac and post-surgical departments at Yale and St. Raphael’s hospitals in New Haven, Ct from the late 70’s until 1990. I have been an aquatic instructor for adults and children and special needs children for much of my adult life.

My medical and aquatic background led me to work with a physical therapy group. I ran an aquatics fitness program for patients who had completed their PT and wanted to continue their fitness regimens...

Working with the PTs, I learned about “whole body” approach to physical therapy…about the importance of posture, symmetry alignment, core strength and the role it plays in our everyday health. One therapist, whom I worked closely with, had a strong background in kinesiology, the study of movement.

In my work with patients and clients it never occurred to me the role vision might play in posture, alignment and movement.

The outstanding therapists I worked with had helped me so much with my chronic back problems and scoliosis issues, but we were all baffled by the OT.

Last year, Donna Segnere RPT, one of these amazing therapists, observed Dr. William Padula working with a patient. She immediately referred me to him. Dry Padula is a researcher and clinician involved in Neuro-optometric Rehab.

I saw Dr. Padula in September of last year for an initial evaluation. I did not even mention OT. I did not think there was any relevance. I was then scheduled to “walk on the track” as I call it, about a week later. It’s called a VMSS gait analysis test. (Visual Midline Shift Syndrome.)

The VMSS or NuerOpTrek is a pressure sensitive mat which analyzes weight shift, gait, balance and visual midline relationships.

The track is about 20 or 30 feet long. I was asked to walk down the track three times. I was being videotaped. Computerized imaging and data from this test led to a prism prescription that would balance my gait and posture. The test glasses were then prepared. As soon as I put them on I felt tingling first on the right side of my head and down my entire right side. I then felt my entire right side relax. I realized at once that the tremor was gone.

I quickly took the glasses off and asked Donna (who was there) to grab a stethoscope. She and Dr. Padula could both hear the “helicopter effect” in my leg muscle... We then put the glasses back on and Donna listened while the sound faded. I could feel the tremor subside and then it was gone.

I got my glasses on October 8th of last year. I was completely tremor free for about 2 months. My posture had improved and scoliosis severity lessened as observed by Donna and Dr. Padula The excessive fatigue was also gone. I could stand without any effort at all. I had had cognitive issues that also completely disappeared.

The tremor began to return a lesser degree, gradually near the end of December. I “walked on the track” again in January resulting in a new script. These lenses again relaxed my right side and eliminated the OT for about 2 weeks. We made a third set of lenses with about the same results. We have returned to the original pair of lenses. These seem to be the best so far. My tremor today is not completely gone like it was last fall, but my OT is definitely improved.

I have some theories about why the tremor returned, but nothing definitive has been determined yet.

I have not completed my work with Dr. Padula. I will be making an appointment when I get home. Of course I’d love to be completely tremor free again.

I have learned that vision affects balance, posture, movement and base of support.

To demonstrate, ask a subject who is able, to stand on one foot with eyes opened. He should be steady and stable on one foot. Ask the subject to close his eyes and stand on one foot.. The subject will have a more difficult time standing on one foot, possibly even stumbling to keep from falling. In this example balance and posture are affected by vision.

Ask the subject to stand still with eyes closed. He may tell you he feels as if he is swaying and you may even observe that motion. Vision affects balance in this instance.

Observe someone with bifocals in front of a computer. The head will most likely jut forward, shoulders round and push forward. A change in vision in this instance has altered posture.

The optic nerve is located in the back of the eye. Its fibers extend to the occipital lobe in the back of the brain where images are processed. Some fibers from the optic nerve also extend to the midbrain where they converge with nerve fibers associated with proprioception, kinetic function, posture, balance and cognition.

My question is this …..Is my impaired vision sending “impaired” messages to that part of the midbrain concerned with my gait, balance, posture and cognition? Is this also what is causing my OT?

When the prisms corrected those “impaired” visual signals, my posture, gait, cognition and OT were also corrected.

My brain and thus my OT have been successfully, noninvasively treated through my eyes.

Can this treatment work for other OT sufferers?
Do other OT sufferers have similar eye problems?
Do other OT patients have an undiagnosed eye issue?
Can OT patients who do not have an underlying eye diagnosis benefit from this treatment?

I think my experience may be an exciting clue to the OT treatment.

I hope that my experience can someday help us all.

It has been my privilege to speak to you today. Thank you

Nancy, who spoke with me, also had a positive experience with prism glasses. Others expressed interest in following up with this form of treatment.
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Re: Reports from the Omaha Meeting and Research 2014

Post by Betty »

Hello from Florida!

I thought I would add a few words to what has been written regarding the meeting in Omaha.

First, I think we all want to thank Peggy for the wonderful job she did getting everything organized for ALL the meetings thus far. We must also thank Jeff for all the work he has done on the Forum, the signs and the “goodies” he brought for everyone. His wife, Beth, is also to be thanked for getting the Yoga classes set up for us…..then last, but certainly not least…..thank you, Gloria, for bringing us all together through the website Jeff insisted you allow him to put up waaaaay back in 2000!

Regarding the trip to Omaha ~ I was thrilled to be able to participate in such a momentous event. My husband, Paul, and I were unable to attend the one two years ago, but were there this year ~ eager and excited. One could feel the excitement in the air and hear it in the voices of everyone there. Happy faces and happy people, just to be among so many others with the same difficulties we all experience on a daily basis.

As each participant went for their appointments, we were so eager to hear of their experiences ~ had they been able to do all tasks asked of them? Were there some they were unable to do (like walking heel to toe)? I think we all failed that one; even some of the “control subjects”. We joked, if stopped by the police and asked to do “the drunk test”, we would most certainly fail.

I think we all had the same testing done, but each of us performed on different levels. Speaking for myself….I failed more than I passed; but that was what they wanted to see. During my session with my doctor (I had Dr. Danish Bhatti), I tried to do all he asked, but did fall short on most. That was okay ~ it was the best I could do and that was what they wanted.

I took my records from Dr. Seth Pullman, the neurologist who diagnosed me at Columbia Presbyterian Medical Center in New York, December of 2003. Dr. Bhatti knew Dr. Pullman and told me he is an excellent doctor. He checked the reading of my tremors in 2003 and then put his “smart phone” on my thigh and had me stand to check the rate of my tremors now. In 2003, they were 16.5 htz, now they are 17.5 htz.

He then had me go into the hall and walk back and forth, trying the heel to toe exercise ~ unable to do that; stand with feet together ~ unable to do that; stand with eyes closed (very scary) ~ unable to do that.

He told me to stand facing the wall and he was going to pull on my shoulders and I was to prevent myself from falling. I told him I didn’t think I would be able to do that and asked if he was going to be there to catch me. He assured me, he would NOT allow me to fall. Soooo, I stood (shaking) and he pulled on my shoulders, back I went, but he caught me. Again, he pulled on my shoulders, this time more vigorously, and back I went, arms flailing; again he caught me.

After he had done all his testing, I had Katy, a therapist come in, and she put me through the paces. She had me sitting, standing, marching, trying to stand on one foot ~ unable to do that; then the other foot ~ unable to do that either.

She had a stop watch and told me she wanted me to stand for two minutes ~ WOW! I stood and immediately started to tremor and weave back and forth. I was gripping the floor with my toes (shoes off). I got very warm (exerting a lot of energy); but continued to stand until I felt my legs were going to buckle. I told her I had to sit, and did. I was sure I was close to the two minutes she had wanted me to stand. I asked her how long I stood; she looked at me and smiled, and said 52 seconds! We both laughed.

We went into the hall and she had me walking back and forth, slowly and then at a faster gait. She had a step stool in the floor and told me to walk down the hall and step over the stool. I did it, but not easily. I was then asked to walk backwards…..not easy, but I did it! YEA!

I was taken out into another hallway and had to walk up a flight of stairs and back down. Up is much easier than down; but was able to accomplish that task.

We went back to the original area and I asked if I could sit down; she smiled and told me we were finished. By this time I was exhausted, but so happy to be there.

The session with Dr. Bhatti and the session with Katy were videoed. All who participated were videoed and will be seen by other neurologists. I hope they will be able to learn from what they see.

I’m sure I have forgotten some things, but I feel I have gone on long enough. I hope this will be helpful to those who were unable to attend the session. Perhaps you will be able to be at the next one.

Jane, I enjoyed hearing both you and Nancy speaking on prism glasses. I will check them out and see if there is anyone in my area who knows anything about them.

So good to see so many people ~ friends I met from our very first meeting and new friends I made in Omaha. Also, to Mike ~ he always keeps everyone laughing and our spirits high! Thanks Mike!

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Re: Reports from the Omaha Meeting and Research 2014

Post by Grammiex4 »

The week I just spent in Omaha with 44 others with OT was an awesome experience. I decided to drive the 1000 miles from Tennessee even if I wasn’t accepted for the study. I had spent 11 years never knowing anyone else with OT and I wanted to meet others. I also had self diagnosed myself after reading information on the OT website and this forum. I had a wonderful Dr. who was very understanding and interested in me. I never felt the need to go to a neurologist to be told what I already knew, especially after reading about so many people going from Dr. to Dr. and still not being given a diagnosis.
OT people are special! From the first night in Omaha I felt a bond with everyone there. Such a warm, energetic group this was. I learned so much by talking to others and made it a priority to sit and talk with different people every day. I made some wonderful friendships I plan to continue.
I can’t put in to words how I feel about Dr. Torres and his team at the UNMC. They were all so caring and friendly. I was fortunate that Dr. Torres was the Dr. who interviewed me and also gave me the diagnosis that I did indeed have OT. The iPhone app they have developed to measure tremors is unbelievable. Now every neurologist should be able to give a diagnosis on the spot. This is a great advance in this part of the disease. Now they must move on and research the cause before a cure can be found.
Thank you Peggy for everything you did to make this meeting so successful. I can’t imagine the countless hours you spent to plan and organize the meeting, dinners, hotel and other activities. My husband accompanied me on the trip and we both were so impressed with everything and loved the hotel. If I had any suggestions for change it would be as others have mentioned an evening in an area large enough for everyone to see and hear with Dr. Torres giving a presentation with time for Q&A.
I also want to thank Jeff and his wife for the publicity and their interest in OT!
Since being home I have found around 16 people I met at the meeting on Facebook and we will be able to keep in touch with each other. We also have most everyone’s email address and can communicate that way also.
I can’t wait for the next meeting! And I hope everyone will continue to remember the importance of funding for this research and our support of the Foundation Dr. Torres has set up to help us.

Miss you all and hope to see you again! Pat
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Re: Reports from the Omaha Meeting and Research 2014

Post by admin »

At the Omaha meeting there was a discussion about the OT travel cards. One concern that was mentioned was the need to carry a small card. For example, "what if I am stopped while driving and need to explain why I can't stand".

As a result, a modified a design for an OT wallet sized card is available to download. It contains a larger "International Symbol of Access", a brief general description and how to get more information if needed.

This new card has been setup to print on a variety of business card templates that are available for desktop printers and at local print shops. Also, let us know if this new version would be helpful in other languages.

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Re: Reports from the Omaha Meeting and Research 2014

Post by Betty »

Thank you Jeff for the printable cards....they are great to have, and you are so helpful.

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Re: Reports from the Omaha Meeting and Research 2014

Post by MikeS »

Hi Everyone
Well I have just arrived home from my visit to the USA all in all it was fantastic I won in Vegas ! I recorded a song in Los Angeles with an old friend who is a record producer and its called 'I cant stand still ' ! and most important my trip to Omaha ..Wow what can I say I met so many wonderful people some old friends and some new which was good because it gave me a new audience for my jokes.
Everyone there either with OT or partners knows what a nuisance OT so its always great to chat and compare notes . Ive seen the other comments posted and agree with everything written.
Its hard to put into words my gratitude to Dr Torres and all his team for the work that they are doing for OT He is an amazing person with a great sense of humour and the most incredible bedside manner ,his treatment of patients is outsanding
I have to thank Peggy for all her hard work Im sure all that were there will agree she did a wonderful job. Jeff and Beth thank you so much for all you do for us and of course my date for the week Joysey Gurl Gloria a true inspiration to us all.
Im looking forward to seeing more pictures and reading more comments
Keep smiling
Lake of the Woods
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Re: Reports from the Omaha Meeting and Research 2014

Post by Lake of the Woods »

Thank you Mike - always great to hear your positive comments. Glad Las Vegas worked out.....

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Re: Reports from the Omaha Meeting and Research 2014

Post by gloria »

Hi! Mike: Glad to see you posted you are home safe from your USA trip to the OT experience in Omaha, Los Angeles and LAS VEGAS with pockets full !!!! It was so great to see you looking well and listening to the comedian within but did not know that you sing too ! I always enjoy your company because we have the same mind set about OT so hope to see you soon on Skype and look forward to your postings on the forum. As Always, Joysey Gurl Gloria
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Re: Reports from the Omaha Meeting and Research 2014

Post by magnbud »

It was just wonderful getting to see all of my OT friends again in Omaha. As Gloria says, it is truly the best medicine! Dr Torres and his staff are amazing and I am so grateful to them for their efforts. Peggy works so hard for us too and the meeting went smoothly. We are raising money and have awareness for OT like never before! Blessings to all.
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