OT Meeting Houston - March 10-11 discussion

[admin]

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Please reply to this discussion and post your feedback and thoughts from the Houston OT Meeting, thank you

[jitterbug2]

Gloria, Jeff, Beth,
Thank you very much for maintaining the momentum. This meeting emphasised your commitment to the cause of improving the lives of OT sufferers. Much thank also to Pat and Maggie for arranging the venue and speakers.
Salient observations;
Jane's excellent (unscripted) summary of symptoms and solutions reinforced the need to focus on physical fitness, posture and suitable relaxation in order to cope. All of us are trying different means and we need feedback on progress. I will commit to providing updates to my optometrists and to all the gang on my experiences with tinted varifocals. I would like to hear more on Dr. Padua's prescriptions for prismatic solutions.
Mike's contributions, as always, were direct and informative. There must be something worth investigating in oxygen therapy. I had been reluctant to make the long airplane trip from Aberdeen, Scotland following bad experiences from previous flights of shorter duration. On my return trip from Houston I took all the extra precautions by using Airport Assistance, upgrading to Premium Class, keeping hydrated and doing my in flight exercises. In spite of all this I woke up after a two hour nap with a searing pain in the back of my brain (I have very rarely suffered from headaches in the past) and was barely able to stand far less walk and attribute this to the probability that there is a link to the oxygen deprivation that is to be expected in all pressurised aircraft. I will write to KLM to try and discover what the oxygen contact is on overnight flights. I suspect they turn down the oxygen to ensure that everyone falls asleep. They might hide the truth but that has always been a suspicion of mine.
Dr. Jankovic's presentation was informative but quite disappointing in that he covered general information that must be very familiar already to long term patients (most of the audience) and did not engage in a decent exchange of ideas. Although this was a perfunctory performance I did learn from the pictures of the brain scans illustrating the deficiency of dopamine in BET, OT and PD patients. Can anyone tell me the technical description of the part of the brain that was displayed in the colour slide?
I would have liked to hear more on the research into Deep Brain Simulation. Dr. Sabine's report sounds quite non-committal and it would be advantageous to get more feedback from those patients involved in her experiment before we commit to further efforts.
The information from the medical questionnaire should be most interesting. Mike made a wise suggestion that rather than planning a further get together en masse we should invest the NORD funds in suitably controlled investigations into a sample few. From an economic view this makes a lot of sense. All things considered I would estimate we have, collectively, laid out over $100K to gather in Houston however as much as we all appeared to enjoy the event we did not seem to come up with anything radically new. $100K should pay for a decent neurologist and team of researchers to look at the situation and help expedite a programme to help improve the lot of OT.
From my observations we appear to have a well informed and articulate group of patients and should be able to come up with a batch of "Guinea pigs" that could co-operate in a range of non-intrusive experiments to try to reach some conclusions on improving courses of therapy.
Again, from the post conference discussions, it would seem like Omaha has the most committed team of neurologists and therapists and would be the best site for controlled investigations. Those who live nearest would be the sensible choice for participating in the survey however if there are insufficient candidates we might have to consider other options.
Thanks again for everyone's consideration and contribution. I feel I have made several new friends.
All the best,
John

[admin]

Hi John

It was great to meet you, and thank you for posting on the meeting!

Here's a link to additional information on the DaTscan that was referenced in the slide presentation:

http://bit.ly/daTscan

[Janevece]

Thanks to all the wonderful people who coordinated this meeting. It was well thought out, convenient, and informative. It is so comforting to spend time with others who have OT and understand why you cannot stand up to chat!
I had an appointment with Dr. Padula yesterday. He said he would be interested in meeting our group at our next meeting. I also touched base with Donna Segnere RPT who also expressed interest in participating.
This meeting renewed my hope that life with OT can still be rich and rewarding. Thanks again for all who make that possible.

[gloria]

Hi! All: Our 5th meeting was a great meeting with a growing number of OT friends stimulated to work together investigating some of the avenues that were opened to us. A population of special people!!!!!!!! Wonderful to be with all, Gloria

[admin]

Mike traveled to the states again for the Houston OT meeting and let us know that he had posted his OT video.

Great job Mike! Hope the rest of your trip is going well.

http://bit.ly/OTvideoMike

[gloria]

Mike : I just looked at your video, I know the history of it's making and I think the finished video is the most comprehensive presentation of what living with OT is really like that I have ever seen ....... love the musical background too!!!!!! Thank you very much my talented friend, Gloria

[admin]

Hi John

Page 4 - fig 53.3 of this linked document shows a similar scan of someone with OT, PD and a normal control.

The images show a mild dopaminergic deficit in orthostatic tremor, whereas in Parkinson’s disease there is marked as well as asymmetric dopaminergic deficit in the striatum.

[Lena]

Hi,
I am wondering if anyone in Chicago or anyone who knows anyone in Chicago, could recommend a neurologist. I have seen one and though he knew what I had it wasn't his area of expertise. I tried clonazepam but nohelp except sleepiness. I love Mike's video as I have used that phrase so many times when everyone wants to stop and chat and I try to explain that I can't stand still. Many times I stand still for too long and my knees lock and it's difficult to get going again. I am a teacher of ceramics and do other kinds of artwork which is difficult with this OT. I have learned so much from this website about helping myself get along. I also was surprised by many of the ways I was already compensating. One thing that helps me a great deal is my dog. She gets me going on walks every day. She keeps my spirits up by being hilarious and making me laugh everyday and she loves me unconditionally. I adopted her almost a year after my last,best dog died after a long illness. I adopted her from anti-cruelty. She looked like a Rastafarian! One big black furball. I really thought she wouldn't get a home so I took her. Underneath all that hair was the most adorable Shih-Tzu. So the end of my tale is if you can walk, get a dog. If someone else can help you out, if you don't feel well, even better. Thanks for listening. Lena

[Lanita]

I live in Chicago and see a neurologist who too has an awareness and some knowledge about OT. I see him at the most twice a year, mainly to monitor the climax roam I take. During my visits, he likes to have med students, residents or colleagues who haven't seen a person with OT to sit in and observe the symptoms. So I guess I'm helping to educate the medical profession.

[admin]

I received an email from Rosemary and after the Houston meeting she met with another person with OT near her home. She asked that I post this information about an interesting gadget:

I have just met my first OT fellow-sufferer in the UK! She had the most fantastic gadget with her. It is called a flipstick and comes in a soft triangular zipped bag (in different colours), like a small handbag. When you open the zip the stick immediately drops out and automatically assembles itself in seconds before reaching ground level. It is made of aluminium and is very strong and light. The triangular part on top can be used for leaning against. It comes in 3 lengths - 82cms, 87cms and 94cms. The 82cms is for people up to 5ft7ins tall and the 87cms for people somewhat taller etc. It doesn't look like one of those bulky medical aids which are such a struggle to open whilst standing there shaking. It is such a pity I didn't know about this before I travelled to Houston!

http://www.flipstick.co.uk



Also at the meeting there was also a request to post the information about the rollator that Gloria was using. It is a "Featherlight" rollator, it weighs 14lbs / 6.4kg. In most cases if you are traveling with a rollator or wheelchair, airlines will ship these for free. This photo is a slightly newer model with a bag under the seat.

[Lake of the Woods]

Hello everyone,
Mike - I loved the video and song and couldn't help but notice that in the one picture you had your shoelaces matching your shirt - way to go!

Good to see you have that fashion sense - of course I saw your flashy shoes in Houston so I know!

It was wonderful to see my OT friends in Houston and to meet some new ones - it is such a comfort to have each other.
Peggy

[admin]

REPORT FROM HOUSTON:



OT Meeting, March 10-11, 2016, at the Crowne Plaza River Oaks, Houston
MARCH 10 MORNING MEETING

With a warm welcome from Gloria, founder of the OT Resources website that has brought all of us together, the 2016 OT Meeting at the Crowne Plaza River Oaks in Houston got underway. “There are no miracles, but in unity and numbers there is strength and we will share our stories and learn from one another,” said Gloria in her opening remarks.
Wini reported that there is currently just over $16,000 in the OT Research Fund at the University of Nebraska Medical Center, representing 60 gifts from 28 individuals. Dr. Diego Torres-Russotto leads the OT Clinical Study in Omaha where he works with six additional doctors and his very supportive staff that also volunteers their time during our participation in these studies.

Peggy gave a brief update on Dr. Diego Torres-Russotto’s clinical studies at the University of Nebraska Medical Center where many of us participated in 2012 and 2014. Dr. Torres-Russotto has been asked to prepare a one-page factsheet on OT. A dozen people attending this meeting were part of the 44 OT patients participating in the 2014 studies. This is the largest study ever conducted on OT patients.

Pat shared a report on our fundraising and grant awards through NORD (National Organization on Rare Disorders). Since 2008, we have raised $72,031, awarded $50,182 in research grants, and paid $4,445 in administration fees leaving a balance of $17,404 toward the next grant which will be awarded when we reach $35,000.

Separate reports on the OT website detail research that has been conducted via grants made by NORD to Dr. Sabine Meunier and by Dr. Diego Torres-Russotto’s ongoing clinical studies in Omaha as reported by Peggy.

Jane, RN, an OT patient of Dr. William Padula in CT, shared her story of working with this neuro-optometrist who uses a pressure-sensitive track and video imaging as well as electrodes measuring brain waves to assess gait, posture and balance and visual-neuro-spatial processing of patients with OT, MS, head injuries and other mobility-limiting diagnoses. He has a following of patients worldwide and frequently lectures on his approach to balance, gait and tremor issues.

Dr. Padula developed prism glasses for Jane and when she first tried them on, the tremor went away for two months. In the two years she has been working with Dr. Padula, she said, “he is able to break the tremor in his office, but cannot make it stay away.” Jane does optic exercises that she finds relaxing and helpful, she also sees a physical therapist who works closely with Dr. Padula on postural and core strength and she walks two miles several times a week. She feels she is “better, but not cured,” and continues to see Dr. Padula. Jane reports that she had no ambient vision on her left side until she began wearing the prism glasses. Jane mentioned that according to the physical therapist she works with, “everything in the body is connected.”

In their absence, Peggy reported that Nancy and Linda have had help using prism glasses.  They both have seen Dr. Skelsey in WI and Nancy gave a report along with Jane at the Omaha meeting and advised how prisms had definitely improved her tremors. 

Nancy decided to have eye surgery to lower her eye pressure due to glaucoma. It wasn't necessary but a convenience so she wouldn't have to use eye drops daily. Unfortunately since the eye surgery, her prism glasses are not working as well but she is still looking into it of course. Linda listened to Nancy's presentation in Omaha and followed up with Dr. Skelsey and is having good luck using her prisms - both women have said that while their tremors have not disappeared, wearing prism glasses has definitely helped.  Peggy is waiting for an appt to see a Neuro-Ophthalmologist in Canada.

Michael told of his experience having heart surgery and when he awoke from the anesthesia, on oxygen, the tremor disappeared for two weeks. He later tried new meds and his tremor disappeared for two days. He had surgery again and oxygen which eliminated the tremor for one day. He is pursuing an oxygen trial.

James also experienced an absence of tremor following oxygen. He later went to an “oxygen bar” for 30 minutes but did not see much change in the tremor. “Seems like a limited fix,” was the general consensus, although two short-term experiences out of 20 OT participants at this meeting is 10%! However, John did not have the same experience following surgery, anesthesia and oxygen.

Pat has been working with Dr. Padula and using prism glasses but has not noticed any lessening of the tremor in the five months she has been trying them. She will begin working with the physical therapist later this month and Dr. Padula has ordered a new pair of glasses to try, as well as continuing optic exercises for the next four months.

John’s doctor discounted prism therapy and thought color sensitivity might be the reason, recommending tinted lenses that gave John some measure of relief. “It’s peripheral vision that affects our balance,” added John.

Jane offered that she has “lazy eye” and did not have results from tinted lenses. But her new prism glasses only work for a couple of hours and then the tremor returns.

The question was asked, “If your eyes are unequal such as 20/20 in one eye and “lazy eye” in the other, might that contribute to OT?

James commented that he has done intense leg exercises for the last four years that he feels has helped, a “use it or lose it” approach.

Joanne uses a rowing machine for full body exercise. Marianne experiments with PT and dance, “big steps and sweeping motion,” and adds a one-pound weight to each ankle when walking around at home, which seems to help. She recommends visiting http://www.Interplay.org

Helen has been working on her core muscles for several years and continues to do leg strengthening muscles at home. Until recently she participated in half marathons and she can stand as long as she needs. She said that her OT has not progressed at all and stresses that she walks and works on core strengthening every day. Helen feels that psychology is as important as physiology.

Lanita has taken Pilates classes three times a week in addition to a private Pilates session for core strengthening for the last four years.

It was pointed out that as we age we tend to concentrate on our front muscles, flexing forward, and less on our back muscles which help with extension. Standing straight and walking with a long gait are recommended. Tim noted that the gluteus muscles are not exercised while sitting.

It was also suggested that gripping with our feet can cause cramps and even plantar fasciitis.
Connie, who first noted OT symptoms over 35 years ago, shared that taking a large dose of Gabapentin (1800 mg) each morning enables her to get through her very busy days.

Linda noted that walking on snow was a challenge (she’s from San Diego!) but when she changed from toe-heel to heel first, walking was easier although it didn’t change the tremor.

Debbie found walking in the ocean very difficult. Rosemary shared that while she couldn’t stand in the ocean, she could stand in a swimming pool.

The consensus seemed to be that core strength and walking for exercise are most important because as we age we don’t move as much as when we were young. Footwear can make a difference, as well.

Jeff stressed that the OT Resource website relies on the stories people tell about their experiences. The content comes from us and the more we share, the more information is disseminated and builds awareness of OT. New posts can reach as many as 9000 people!

The question was asked, “how many OT patients here have had vertigo?” Four hands went up.
Ed noted the relationship between head exercises and restoring ear crystals. He wanted to know where to learn more about new clinical studies. This information is posted on the OT Resource as it becomes available. Wini took information from the OT Resource to her neurologist who had never heard of OT! This is something we can all do.

MARCH 10 AFTERNOON MEETING

Maggie, who has been an OT patient of neurologist Dr. Joseph Jankovic for 14 years, introduced our keynote speaker, who founded his Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston 39 years ago. Dr. Jankovic is professor of neurology at Baylor College of Medicine, director of the Centers for Excellence of the National Parkinson Foundation, Huntington’s Disease Society of America and Tourette Syndrome Association. He is the author of many books, collaborates with other clinicians, sees patients and searches for cures. He has received numerous national awards and recognition.

Dr. Jankovic discussed the relationship of OT to all other tremors, noting that many people with tremor never seek treatment. Tremor is a neurological anomaly and is defined as an involuntary, rhythmic, oscillating movement. Simply put, when something goes wrong, we shake!
Resting Tremor is observed when a patient is sitting still as in Parkinson’s Disease 4-6 htz. When the patient moves, the tremor goes away.

Postural Tremor (Action Tremor) when the patient reaches or extends (as in standing) and tremor is observed, as in Essential Tremor and in OT which is measured at 14-16 htz and as high as 21 htz.
Kinetic Tremor is the result of stroke, degenerative disease, task-specific, Wilson’s disease, results of drugs and toxins and miscellaneous seizures.

Essential tremor has a connection to hearing loss. 4.6% of people over 65 have Essential Tremor. 20% of those with Essential Tremor develop Parkinson’s Disease. Essential tremor does respond to alcohol.

Brain scans show a deficiency of dopamine in the brains of patients with Parkinson’s (more pronounced deficiency) and Essential Tremor (less). And even less dopamine deficiency in the brains of OT patients than people with Parkinson’s and Essential Tremor.

Videos were shown of task-specific tremor as in handwriting.
Researchers have not found the gene that causes tremor. Dr. Jankovic has received a grant from the NIH to try and discover the tremor gene.

OT begins in the 4th or 5th decade and was identified by Dr. Ken Heilmann. Many people with OT have had a history of leg cramps.

Of 45 patients, Dr. Jankovic has observed that the median age is 61, that 50% of OT patients have a family history of some kind of tremor and that OT patients are 50/50 men and women.

Of 184 OT patients at Mayo Clinic, 4.9% had a family history of OT (specifically).
Beta Blockers help 31% of OT patients.

Even though OT can progress, the rate of htz does not change. Both legs are found to shake at the same htz frequency.

Treatments range from Primidone to Gabapentin to Phenobarbital to Clonazepam, to Levodopa, deep brain stimulation (DBS) and spinal cord stimulations. Lyrica is similar to Gabapentin. Note that abrupt cessation of Clonazepam can cause seizures and be life threatening. Weaning must be gradual and physician-assisted.

Patients with OT can have difficulty writing.
Only 10-15 patients have had DBS which is reserved for severest symptoms as there are risks of stroke and infection. The results, when positive, are long term.
Regarding oxygen therapy – just because something seems to mitigate symptoms doesn’t mean it’s a cure.

OT is a lifelong condition. However, most patients reach a plateau and don’t worsen.
Dr. Jancovik thinks OT is hereditary and ET is genetic. He has treated thousands of patients with Parkinson’s and finds that loss of smell is common in Parkinson’s patients 10-20 years before the onset of the disease.

He is not aware of any studies being conducted on visual-neuro-spatial processing.
Gloria presented Dr. Jankovic with an appreciation plaque and group photos were taken.
The balance of the meeting was moderated by Michael who invited participants to share their backgrounds, experiences and coping skills.

General Coping Strategies
• Combat fatigue with naps, café latte, emergenC (not Airborne) for energy boost
• Pilates, swimming and deep water therapy
• Admit and accept what we cannot change, do the things we can (and the wisdom to know the difference!)
• Avoidance of certain stand-up situations such as receptions, cocktail parties
• Sitting near the front of church for communion; sitting during hymns even though you might be asked if you’re an atheist!
• Use a drafting chair in the kitchen, carry a cane, push a wheel chair, use a CarCane and a folding cane seat such as Magellan’s stadium seat or DRIVE seat
• Take a large dose of gabapentin in the morning!
• Take dopamine and keep active! Biking! Dancing! Walk and do core-strengthening!
• Be able to laugh at ourselves as when one participant forgot her glasses and walked into the men’s room by mistake!
•
MARCH 11 MORNING MEETING

A call for suggestions for future meetings included the following
• A pharmacist to discuss how various OT medications work
• A medical technician to demonstrate aids such as cane seats, walkers, other devices
• Return to Omaha when Dr. Torres-Russotto is ready to continue his clinical studies
• Choose to meet in a major hub such as Boston, Chicago, NYC and Columbia-Presbyterian Hospital (Gloria and Anita will ask C-P if there is interest)
• Another suggestion was California; also Barcelona, Bermuda
• Invite Dr. Padula and the PT he works with to give a presentation on prisms, exercise and visual-neuro-spatial processing
• His offices are in Guilford, CT, and Palm Springs
• Compile commonalities
• Survey sheets were filled out by participants, Pat will tally results
• Jane offered to conduct a symptoms, injuries, surgeries, medications history and results survey
• Look at occupations related to OT as well as nutrition, exercise, stress-reduction
• Speaker on oxygen therapy; make a suggestion to NORD to award research $$ to a study of anesthesia and oxygen?
• Lecture on Deep Brain Stimulation
• Time of Year: spring or fall
• Committees – Mary offered to help
•
Other suggestions
• Have our doctors visit the OT Resources website which is public and anyone can access
• Participate in a private FaceBook site that is closed to outside searches
• 1200 individuals are registered on website
• 460 on FB Public
• 240 on FB Private
• Look at surveys on The Forum
• Acupuncture has been tried by eight participants with no results
• Institute a registration fee for the next meeting to cover meeting costs. But keep it simple!
• Small groups makes it easier to have these group conversations and personal interactions; this is a very valuable format!
• Have breakout sessions then return and report to the entire group
• The main draw is the participant-sharing but we need a focal point!

Pat and Maggie were presented with plaques and thanked for organizing these meetings. We are grateful for all who helped: Jeff and Beth, Helen, Peggy, Lanita and Mary.

Thanks, everyone, for making these meetings informative, personal, interactive, hopeful, exciting, supportive and meaningful! Humor and laughter are still the best medicines and they were shared generously. Also the glass of wine and the odd gin and tonic! See you next time. And keep standing up to OT!

Respectfully,
Pat,

March 24, 2016

[admin]

Nord update from Pat on the status of the fund and research ( this information has also been posted in the NORD research fund section of the forum )



NORD OT RESEARCH FUND GRANT AWARD HISTORY

We began our affiliation with NORD (National Organization of Rare Disorders) based in Connecticut, in 2008, establishing the OT Research Fund and sending on-line updates and appeal letters twice a year to everyone registered on the OT Resource web site. NORD requires its fund members (of which we are one) to raise a minimum of $35,000; NORD takes $3,000-$3,500 in admin fees, and makes grant awards to clinicians who submit proposals to their Medical Advisory Board. We have no input in this decision. But in return, donations made to the OT Research Fund are tax deductible under the NORD nonprofit umbrella. If, over the course of five years, a member’s fund does not reach $35,000, the monies revert to NORD.

In 2013, we reached over $40,000 in our OT Research Fund at NORD and two grants, of $20,000 each, were awarded to Dr. Sabine Meunier in Paris Looking at artificial TMS (trans magnetic) stimulation of the cerebellum and its effect on OT and Dr. Julian Rodriguez in Sydney, Australia, Pregabalin for the Treatment of Primary Orthostatic Tremor.

Dr. Sabine competed this phase of her research (see below), while Dr. Rodriguez was not able to get approvals to begin his study within the timeframe of the grant, resulting in his allocation of $20,000 reverting back to the OT Research Fund in 2014.

In 2014, the OT Research Fund received a gift of $10,000 from the Lundbeck Foundation bringing our total to $48,601. NORD then took an admin fee of $3,500 and awarded $30,000 in 2015 to Dr. Aparna Wagle Shukla for rTMS Therapy for Primary Orthostatic Tremor: A Novel Approach. Her research continues to move forward and an interim report is due now.

At present there is $17,404 in the NORD OT Research Fund.

Summary of Dr. Sabine Meunier’s report.
Sabine Meunier, MD, PhD, a neurologist and senior researcher at the Movement Disorders Clinic, Pitié-Salpêtrié Hospital, Paris, along with Drs. Cecile Gallea and Marie Vidailhet, conducted a pilot study to see whether artificial stimulation of the cerebellum could improve primary orthostatic tremor (POT).

Conclusions: Localized cerebellar atrophy and hypertrophy of the SMA (supplementary motor area) were found in POT patients in the present study and in patients with essential tremor in a previous study (Gallea et al 2015). This pattern could represent a “generic” signature of tremor.  Hypertrophy of the cerebellar vermis is specific to the POT patients and likely represents a compensatory response, opposing the postural instability caused by the lower limb tremor.

Five days of stimulation in nine POT patients (and nine non-POT volunteers) are able to induce functional changes (a decrease in the amplitude of the tremor as measured by electrodes) but not strong enough to translate into clinical improvement (the patients did not feel any change in their ability to stand). “We could try longer stimulation duration or target another brain area like the SMA (supplementary motor area),” in future studies, according to Dr. Meunier ,who would like to conduct a detailed MRI mapping of the resting state networks of the cerebellum in POT patients AND investigate the cognitive cerebellum resting state network, correlating it putative impairment with the performance of various cognitive tasks.

Respectfully submitted, Pat March 4, 2016

[admin]

UNMC - Dr Torres update from Peggy that was presented at the meeting

REPORT ON DR. DEIGO TORRES-RUSSOTTO AND THE 2014 OMAHA RESEARCH

Dr. Torres advised that six doctors that were involved in the research, including himself, are currently working on six different papers that involve: data analysis of the EEG, data analysis of the APP, physical exam data, psychiatric assessment data and balance testing that was done by the physio therapists.
Dr. Torres is also working on a literature review of about 450 cases.

There is presently no news on any future research with Dr. Torres and he gave no timeline on when these papers will be complete but Peggy will keep in touch with him regarding these topics and any more news will be communicated through The Forum.

I think everyone would agree that any future research conducted by the Omaha team should be given a priority as far as OT people willing to travel and participate. The fact that the Omaha medical team made up of 30 professionals that conducted this research ALL donated their time to do this speaks highly of them and their dedication to help us.

Peggy