Suggested questions for the researchers

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

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Abinadi
Posts: 53
Joined: Thu Feb 05, 2004 3:36 am
Location: Volcán, Chiriqui, Panama (Central America)

Suggested questions for the researchers

Post by Abinadi »

This part of the discussion thread was moved from "Reports from the front lines at the Omaha OT Conference" so that it would be easier to find and respond to by everyone.

If you also have questions for the researchers, feel free to add them here.
Rich
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.
Betty
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.

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.

QUESTIONS

(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?
Betty
Posts: 388
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: Suggested questions for the researchers

Post by Betty »

Hello Rich,

I had read your questions before they were moved and thought I would address a few which applied to me.

(05) Is there any indication that physical therapy contributes to a lessening of the weakness or tremor symptoms? Does exercise really help? What kind?

I have had a personal trainer twice; once before I knew I had OT and was told I needed to strengthen my muscles and again after I had been diagnosed. The first time, I worked three times a week; two hours each session, which was too much and too long.

I would be exhausted, and so fatigued, I couldn't get off the floor (I couldn't stand to do the things required and would sit or lie on the floor with the trainer), and would have to crawl to a chair and pull myself into the chair and sit before I was able to leave the facility.

My trainer would comment when I was using some of the machines, I was getting much stronger in the legs as well as body, yet when I would try to get off a machine and stand, I was unable to do so. My tremors were severe and muscles very fatigued.

I also tried a personal trainer a few years ago, this time knowing I have OT. I explained my condition to the trainer and she worked with me to try to strengthen my legs and core. Again, my legs were stronger (able to press more weight), yet were weak and fatigued when I would try to get off the machine and stand.

I had a routine I did daily, but saw no improvement. I used several machines and a treadmill; but after several months and no improvement, again I stopped. The fatigue and tremors were only worse for me. Perhaps it was just me, and others have experienced good things. I hope so.

(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?

I, too, have questioned the stress factor and whether the adrenal glands are somehow involved. I don't know if any neurologist(s) has checked this. Many, if not all, say stress is a major factor.

(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.

I haven't a "number" system for detailing the deterioration of my OT, but I can tell you I used to gage mine in six month periods. We had a summer home in NC and would spend six months in NC and six months in FL (which is where we live). I could tell a difference in my OT each six month period we moved from one place to the other. Things I was able to do six months earlier, I was unable to do.

It is just a matter of learning different ways of coping with our problems and trying to do the best we can each day. I am one of those very stubborn women who will NOT say "I can't"; I now say, I am unable to do certain things.

I think your questions were excellent and hope you got some answers. I was sorry we were unable to attend the meeting, it sounds as though it was an excellent one. Perhaps next time.

Thanks, and keep posting,
Betty
Dwight Kraai
Posts: 27
Joined: Fri Jan 23, 2004 2:19 pm
Location: Deerfield Beach Fl.

Re: Suggested questions for the researchers

Post by Dwight Kraai »

Hi Betty:
In reference to your #15 above. "(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]"
I have been active in city activities and occassonially (did )speak at a podium. I will no longer do that. I will simply ask for a chair.
I feel that the basic prosblem is that an OT person's mind is doing two things: trying to speak coherently, and most importantly trying to maintain ones balance. One with OT knows what I mean when yhou shut your eyes while standing. Immediately you lose balance. My mind will not let me do both properly at the same time.
I hope to hear if others have problems speaking at a podium while standing.
Also, some where a question was raised as to how a blind person handles OT. I hope this aspect can be developed.
Regards
Dwight Kraai
Betty
Posts: 388
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: Suggested questions for the researchers

Post by Betty »

Hello Dwight,

At this point in my life, I would not be able to stand to speak even with the assistance of a podium. As soon as I stand, my tremors start and the only way I get relief is to either lean against a wall of sit.

Holding on to a podium, or anything else, my tremors transfer to the upper body and arms and I have, at times, had to find a place to lean or sit to stop the shaking. Whatever I am holding on to will visibly shake and is quite noticeable.

Since closing ones eyes makes anyone with OT off balance or trying to walk in a dark area is next to impossible for me. It would be interesting to know how someone who might be blind handles these situations.

Perhaps someone will address this.

Best to you,
Betty
Abinadi
Posts: 53
Joined: Thu Feb 05, 2004 3:36 am
Location: Volcán, Chiriqui, Panama (Central America)

Re: Suggested questions for the researchers

Post by Abinadi »

Dwight Kraai wrote: Also, some where a question was raised as to how a blind person handles OT. I hope this aspect can be developed.
Regards
Dwight Kraai
Hi Dwight,
Yes, actually I did ask that question of the doctor during the last day's presentation and Q&A of the Omaha2012 OT Conference, along with my reference to the fact that I thought there was at least one such person who is already a member of the OT Resource site. He replied that they are very interested in this aspect and hope to find such subjects and that they are part of their future intentions to study the effect of blindness on the OT disorder.

Like you, even though I still have a position (in my case, church leadership) that calls for me to conduct meetings while standing at a podium, I have been unable to do so now for over six years. My organization just gives me a pass, even though I am sure there are people there even yet who don't fully understand how it is possible for an individual, such as I, to arrive at the building, stroll about, stopping to briefly greet each person in the room, and then take my place on the podium - and yet not be able to stand in a stationary position to address the group. I can only imagine them puzzling it out in their mind but being too polite to drill down for a better explanation. I suspect to some of them, it is put down to my just being "odd".

And like most people here, I have no desire to go on at length in an attempt to help them understand because it just starts to feel like I am hosting a pity party. It just takes so much effort to educate a person, much less a whole group of people about the mysteries of this disease, that you quickly seem to reach a point of diminishing returns as you trade on the patience of people who are hard-pressed to understand this OT thing. There are just no big, well funded foundations raising awareness with national publicity programs nor are there any telethons being hosted by international comedians or Hollywood stars. It is a lonely disease and this aspect of OT being hard to comprehend is one of the biggest reasons for that.

Public speaking while standing is just another one of the things on my life's list that is no longer possible for me to participate in that manner. But hey, that is OK, because there are a lot of other things that are still available to me.

Ciao hermanos, Rich
Lanita
Posts: 4
Joined: Wed Jun 29, 2011 7:27 pm

Re: Suggested questions for the researchers

Post by Lanita »

In response to some of the questions that were asked. I was diagnosed 3 years ago. I tried physical therapy which no real positive results except perhaps more awareness of my body movements. I also tried accupuncture and some foul tasting Chinese herbs. No positive results occurred. I then tried a regime of Pilates (3 mat classes and 1 using the reformer and other machines each week). I have also been trying 3-4 mg of Clonazepam daily. The drug seem to help initially. Then it seemed that my system adjusted to the drug with less positive effect. I have adjusted fairly well to the sleepiness. Actually strengthening my body with the Pilates seems to have helped the most. I feel stronger and more confident in moving around. I continue to have the usual symptoms of doing chores that require bending over, walking in crowds and standing.
My legs do get tired after activities and I have to either lie down or prop my legs up till they feel better.
My questions would be do others' legs feel very tired after activities and the success of Clonazepam and how long did it seem to help?
Thanks so much to all of you and for this website.
Lanita
Abinadi
Posts: 53
Joined: Thu Feb 05, 2004 3:36 am
Location: Volcán, Chiriqui, Panama (Central America)

Re: Suggested questions for the researchers

Post by Abinadi »

To Lanita (and other good folks who have contributed here as well),

At this point with this disease, it is really enough that many of you have taken the time to share what is relevant in your own experience with OT. I thank you for your shared experiences and feelings. It is stangely comforting and even helpful.

With no widely applicable solution, treatment, therapy, drug or "fix" it seems the most we can reach for is understanding along with acknowledgement from another sufferer and chagringed realization that someone else truly "gets it". There is a certain perverted solace in having a shared malady that someone else really understands.

It seems that not much is available to those of us with this exclusive disorder at present beyond that. I am grateful that OT is not terminal in nature (whereas life sure is!) and so I continue to adjust my reaction to my continuing deteriorating reality and look for new ways of adapting.

I also actively look for new ways to laugh about it and self-deprecating joking is a kind of therapy of its own.

A friend came calling at my home today whom I had not seen for sometime. She is a "hugger" and as she reached her arms about me, I told her that I was likely going to break out in jitterbugging which I told her was going to be strange because one does not usually jitterbug while holding one's partner closely, but that if she was willing to try a few steps with no music, then I was game. I don't think she knew what to make of it. After all, I look so "normal" until you put me in an awkward position that I haven't planned adequately for. So I make a nervous joke in an attempt to put myself and others at ease.

One time, when turning in place and not doing it very gracefully, my body involuntarily attempted to maintain equalibrium which resulted in my doing a little swaying and lurching until my deteriorating sense of balance got it sorted out. I then asked several nearby people (who knew me well but who still don't understand OT) if they would like to have some of what I had been drinking. Funny to them because they all know me well as a life-long Mormon who has never drank alcohol at all.

And so we all find ways of coping.

I sometimes think of the process as being like reverse evolution. If Darwin was right (and I don't think he was) maybe the end game involves growing a tail and living in water breathing with gills and no need for legs. That would be progress for me because I would then become graceful.

So I bid you all farewell while shaking in my boots, but not really afraid at all,
Rich Young
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