If you also have questions for the researchers, feel free to add them here.
Betty, there are much better (more detailed) notes now available elsewhere on this site and so I will not attempt to restate the many excellent questions that were asked by a number of people in attendance at both of the sessions where questions could be asked.Betty wrote: 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.
But your request does tell me that maybe it is time to post my own list of questions that I had prepared in advance hoping that I would have an opportunity to get some answers. Those of you who were in attendance will recognize some of these questions.
My purpose in listing these here now would be to encourage each of you to put your own questions in this forum. This could then be a place where the research staff could "pick up" on additional input from OT sufferers and it might prove useful to them in further shaping the direction or extent of their studies.
So here goes. My list of questions that was prepared in the weeks leading up to the Omaha2012 OT experience.
(01) Is there muscle weakness and attendant muscle fatigue associated with OT in all patients? Or is that a non-related symptom in my case?
(02) Where does the progressive nature of this disorder take the afflicted? What do the end stages look like? What are the end stage quality of life (QOL) issues at that point which care givers need to plan for?
(03) What is the age of the oldest known living OT patient at present and historically? What is the OT condition of the advanced age patient at that late life stage?
(04) Does OT lead inevitably to wheelchair-assist confinement? To total leg immobility?
(05) Is there any indication that physical therapy contributes to a lessening of the weakness or tremor symptoms? Does exercise really help? What kind?
(06) Are there any treatments or therapy that have been proven effective in alleviating the OT symptoms?
(07) What medicines, herbs or supplements have proven effective in alleviating or lessening OT symptoms? Prescription? Generic equivalent? What are the reported side effects of each?
(08) Any indication that eastern medicine has had any positive effects on OT? What about acupuncture?
(09) Are there any non-traditional treatments that have had a positive effect on OT symptoms? Even anecdotally?
(10) Are there any records or reports of ozone therapy (reportedly a respected treatment in many countries in Europe for other difficult to treat conditions) being effective in reversing or relieving the OT symptoms?
(11) What (if any) other treatments have been proven effective, even marginally?
(12) What are the implications of the interrelated aspects of OT including tremors, balance issues and muscle weakness? How are those aspects of OT related to each other?
(13) Why does a wider stance seem to help both the trembling and the muscle weakness?
(14) Why does the lower trunk (buttocks or hips) resting against a stable support or a three point triangulation play such a palliative or symptom-relieving role?
(15) Stress greatly exacerbates the symptoms of OT. [Personal note: Public speaking while standing at a podium and talking into a microphone drives the OT symptoms through the ceiling, as in, they get much, much worse] Why do stress and adrenaline seem to play such a critical role? Can that knowledge play a role in relieving or treating the condition?
(16) Is there a connection between mercury and OT? Are there any reports or suspicions that would indicate mercury poisoning as a causation factor for OT?
(17) Have there been any connections made between so called silver fillings which are actually mercury amalgam dental fillings containing 50% mercury and Orthostatic Tremors? Since mercury is a known neurotoxin and it is now well understood that mercury dental fillings are constantly out gassing mercury vapors just millimeters from the brain, could there be a mercury dental filling/OT connection? This could be a very important question for millions of younger people who have not yet exhibited OT symptoms, particular since it is still the policy of the ADA to teach and encourage dentists to use mercury amalgam fillings in teeth. It is estimated that fully 50% of USA dentists are still putting this neurotoxin in children's teeth.
(18) What would be both an effective and an objective test (or series of tests) that the OT patient could perform on him/herself, either alone or with the help of one other person that would provide a baseline check on the progress of his/her physical deterioration? I'm looking for something that one could do in the privacy of one's home that produces a measured result, quantifiable as numbers which could be recorded in a written record and tracked over time to give a sense of how the disorder is getting worse or getting better. It could also be a measure of how well or poorly a medicine, a treatment (traditional or alternative) or an exercise regimen was doing in reversing, slowing or advancing the undesirable symptoms of the OT disorder.
(19) If one were to use a stethoscope, would the patient be able to hear the "helicopter" sound of the OT in his/her own leg muscles?