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
• 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!
March 24, 2016