| My Experience with OT:
For many years I have suffered with the symptoms of OT, the last few years my ability to stand has become increasingly brief and normal daily activities such as taking a shower, waiting in line, everything in a standing mode is impossible. In the course of these years, I have seen many doctors who had no idea what I had, and because of the nature of the symptoms of OT it was medically reasonable that I was given a few misdiagnoses, one being Parkinson's. Ramifications of a misdiagnosis are devastating in many ways, emotionally, in time wasted, treatment and wrong medications. Finally in January 2000 I was diagnosed with OT at New York Columbia Presbyterian Medical Center, Neurological Institute, by Dr. Cheryl Waters , with confirming tests by Dr. Seth Pullman. UPDATE: August 22, 2000 In the past few months for medications I have tried Clonazepam ( too sedative for me) and I’m now trying Gabapentin(Neurontin) with better results. I have been slowly increasing my dosage and I see moderation of my symptoms and I feel improvement from where I was before I started any treatment. Yes, the thought of being on medication for the rest of my life is difficult for me mentally but the trade off, hopefully, will be a more comfortable way of coping with OT and the preservation of my independence. UPDATE: AUGUST 9, 2001 My life with OT is one of management, sharpening my coping skills and knowing my limits. I’m thankful that I have found a medication that so far is making me comfortable enough to do things better than without anything. Sorry nothing out there is 100%. I also try not to blame every problem and pain on OT. Try to keep it separate otherwise you may overlook something that has a solution. My thanks to all for the spirit in which everyone is sharing thoughts, responses and experiences. As a result, I’m very happy to report that I feel the “awareness” part of this web site is starting to make a difference. We are showing a very consistent profile of life with this disease. This is important for many reasons. For example, reaching out to people who are suffering with our disease but do not have a name for it . Also it may be offering doctors who have seen only one or two cases of OT the opportunity to read numerous experiences of what it is like to live with this problem. And most importantly, those of us with it know that we are not alone!!! However, this profound and disabling disease needs to be considered more seriously than it is at present. We would appreciate very much any input from doctors or researchers who might have any interesting or encouraging news for us. Yes, this is a very defined disease but it is still reasonable for it to be missed by many within the medical community. The more of us that are identified in numbers the better chance we have to be recognized for more research!!! UPDATE: May 5, 2002 Each level of the progression of this disease is with the same symptoms but with changes in the degree of intensity. There are certain factors that are reported by many OT people that have precipitated changes in the severity of their OT symptoms, for example, a viral/bacterial illness, chronic respiratory problems such as asthma, surgery, or formidable times of stress. There are a number of OT sufferers that believe they know exactly when their symptoms started, and many like myself, feel it started over a period of time. I was symptomatic for so many years without a correct diagnosis but when I was finally tested for OT using a non-invasive EMG, I tested to 18-19Hz, a rather advanced level of Orthostactic Tremor with only seconds for standing time. Another point that I have not addressed before is that many who have OT also have hand tremors but then again there are many who do not. There seems to be two schools' of thought about a connection with OT & ET (essential tremors) however there doesn't seem to be any conclusive studies for either position at the present time. However it should be noted that the use of alcohol and OT differs from essential tremors where alcohol is known to have a medicinal effect that helps to calm ET tremors, with OT it does not. I was tested and diagnosed with probable Essential Tremors at the same time I was diagnosed with OT. The interesting thing is that since I have been using Neurontin for my OT it has also helped with my hand tremors and at present I'm hardly bothered by them. However, I do have hand tremors when I’m under stress and when trying to write or do sometime while standing only. Also they have not increased in years. UPDATE: October, 6, 2002 I start my days early because I am by nature a morning person. With the help of my medication(1100 mg 3 x per day ) 7:30 am,1:00 pm & 9:00 pm with a full glass of water each time.( Drinking water during the day helps too.) I think I have come to terms of what I expect to accomplish in an average day. Getting involved in a new interest or project will bring the instant relief of distraction from the everyday. It helps if you plan your days activities ahead allowing amply time to accomplish work, errands etc. Dealing with anything unexpected during the day only contributes to stress and anxiety, two of our greatest enemies. One of our biggest challenges is dealing with OT in a social or work environment. Our thoughts are filled with the anxiety of how people perceive us. No one can conceive of the horrible sudden physical phenomenon that is happening to our legs as we attempt to stand in a still position perhaps trying to engage in a conversation. The event is physically disabling and mentally draining. I generally take a deep breath and say "please excuse me I have a standing problem and need to sit down. In the meantime I’m thinking the usual thought, “they saw me walking and now she can’t stand and talk to me!” Also trying to maintain my balance provokes feelings of embarrassment that I’m perceived as being drunk. Having said all this remember we do NOT need to stand to maintain a sense of humor. God knows we need one!! To be continued............Gloria UPDATE: February, 24 2003 In this update I would like to address another aspect of life with OT that our friend Patty from Alaska made reference to concerning her feelings of anxiousness when walking in crowds and going down ramps. (Stairs without railings are next to impossible for us). These feelings are definitely the associated symptoms of OT, imbalance and unsteadiness! I too, have had increased problems with this and have an uncomfortable and conscious fear of being bumped and stumbling. Others have observed there is also a visual connection with our balance problem and prospective of movement. Crowded situations whether it is with people or objects we have trouble maneuvering through such areas. People who do not have OT, have the natural ability to correct and steady their balance if challenged in some way. On the OT Home page there are 2 links to clinical studies on this subject that I suggest you read ( if you haven't already ). They are excellent reports that help explain the core mechanisms that we feel so intensely: First, is the Link reporting "Primary orthostatic tremor is an exaggeration of a physiological response to instability". (Andrew Sharott, Jon Marsden, & Peter Brown), and secondly scrolling down the links, the report " A Disassociation between subjective and objective unsteadiness in primary orthostatic tremor".( Fung VS,Sauner D, Day Bl.) When all else fails, try chocolate I do, it is my anti-depressant of choice....I know about the caffeine thing but it is a great antioxidant so I consider it a health food!!!!!!????? Until the next time, Gloria UPDATE: August, 6, 2003 The beginning of this July 2003 was the third anniversary of this web site. My thoughts of where we are today are more positive than the first time I sat down to write my introduction of " My Experience With Orthostatic Tremor " on the site. I had no idea where this adventure would go, telling my story to an unknown audience, if there was one, or how they would respond. Since then a continuing story has become a remarkable one for all of us who have OT. It is now an extended experience from people worldwide, describing a detailed existence with this life changing disease. Also I no longer believe we are as rare as we are described but rather a grossly under identified disease. Most life experiences of OT sufferers show years of searching for a name for our symptoms, repeated misdiagnosing or dismissal in an incredulous way. I pray that all areas of the medical community will become informed of OT and learn how to identify it. However, on a more positive note, there have been more recent OT studies by some world renowned researchers. Knowing that they have interest in our disease is very gratifying and our sincere thanks to all of them. I've been very impressed with these studies and hope everyone has been checking out the Links on the Home page of the web site. One of the latest studies is an unusually compassionate report, entitled "Quality of life in patients with orthostatic tremor." As for me, I'm trying to keep OT in it's proper place in my life, I try to out smart it by thinking of more do-able ways of accomplishing all things necessary in my day. My medication remains: Neurontin, 3300 mg per day ( 1100 mg in the morning, 1100 mg at noon and 1100 mg at bedtime with a full glass of water each time. For exercise I find walking the most beneficial. It doesn't have to be long exhausting walks, shorter ones and perhaps twice a day are great ! Stretching is very good as well as deep breathing. Exhausting muscle exercises do absolutely nothing for us. Please find your own comfortable physical level to keep your body in tone. Staying as physically active as possible throughout the day rather than sitting for long periods of time is very important. A few months ago I tried a number of treatments of myofascial release on my legs. The result was increased leg tremors.Your constant sharing of knowledge and thoughts are making a difference in our OT world.......... To be continued, Gloria UPDATE: January 9, 2004 One of the most unanswered questions that we all wonder about is the progression of our illness and just how bad it gets. Combined with that is how do we describe it. I doubt that it can be precisely defined for all cases because many have other health issues that co-mingle. However, if we could separate just the OT part of our existence, I would say that when we reach the point where we can only stand for a few seconds is the outer plateau of OT. With time we all recognize and are be able to evaluate our own stage of symptom intensity and factors that manipulate it. For a time we tolerate our symptoms but finally realize that we need help. Taking medication was a difficult decision for me but my life had reached the point where I could only stand for seconds and testing proved that to be true. I now live assisted by medication and get around fairly well but under it's veil I do not feel that my symptoms have gotten worse and clinically remain at the outer range of our disease. When stress levels are up because of some immediate challenge, mentally or physically, we think our OT suddenly is getting progressively worse. However, as life plays out to a more normal rhythm we return to our established range of compromise/or present plateau. Also, for all of us, there is the constant growing impatience we develop from living with this unrelenting disease for so many years. Often this situation leaves many OT people walking around with unrecognized depression that increases the physical burden. True there is no panacea however, we are sharing positive attitudes , coping skills, plus a few medications that take the edge off and marginally extend our standing time by a few extra minutes. Here are a few thoughts that our OT friend Patty wanted to share with us. The first is a tip from her PT on managing your energy and strength and I quote: "If someone else can do it, let them. We see something that needs to be done and we do it. We even feel guilty if we don't do it. We need to conserve our energy and strength to use on enhancing the quality of life doing the things that matter most to us". Patty also wanted to share something her husband came up with to try and help their son understand why Patty is so apprehensive when she is away from home or around crowds. He said "try to imagine that you are always walking on marbles. You can get used to walking on marbles, but, if someone pushes you or stops short in front of you, you lose your balance and fall. That's why you are afraid of being around crowds and / or away from your familiar surroundings". Patty, it sounds like your husband has great understanding. Thanks to the both of you for sharing. Gloria UPDATE: October 9, 2004 Although I have not written an update recently, I have been with all of you on the New Forum reading all the intelligent and thoughtful input. I feel our sense of loneliness no longer haunts us because we are here for each other. Personally I'm finding the way in which I deal with the impact of my OT symptoms is becoming more automatic. For example, I have learned to sit down or walk away sooner than I have to so that I do not reach the point of over stressing and the anxiety that it produces. When I think back in time, I believe this mental process started after I was given a NAME for this malady and I found a medication that works as a crutch. Like everyone else, I still have times of frustration and anger with this disorder. Also, I'm a happy to report that we are making great progress as a group and must continue this momentum. It is so important that every OT person registers on the New Forum and participates in the Survey. It is your way to be counted and to share your thoughts as a sufferer of this disease. Once recognized our numbers will grow and in the future we can go from the Orphan classification of a rare disease to a more marketable one for research. Another thing in our future is to become regionally located so support groups can be formed. At present we are not a funded group, however, here are two organizations that are supportive of our situation : NORD (National Organization of Rare Disease) in the USA is an outstanding group that advocates awareness, information and funding for rare diseases. They have recently included this web site on theirs as a resource for OT. It is the work they do for all rare diseases that makes them a great organization to support. "NORD" www.rarediseases.org The NTF (the National Tremor Foundation) in the UK . This a wonderful Foundation and OT Resources and NTF exchanged Links with each other a number of years ago. We share the same joint venture to spread awareness of tremor disorders. They publish a quarterly magazine (Ready Steady) and though their main focus is ET they are inclusive of information, research and awareness of all tremor disorders. www.tremor.org.uk Your OT Partner , Gloria -----------------------------------
UPDATE: APRIL 2007 I know that I owe an explanation of why I have not made an entry on my Experience Page for a number of years. In fact I recently received letter from a new OT person who was going over my page and saw that I had not added an update since 2004 and inquired if I was still “in business”. The truth of the matter is I don’t like to share unhappy news. My husband has been very ill and has had three life threatening illnesses within four years. The latest is recurrent lymphoma . I have been so consumed with his care that things became surrealistic . Many of you have experienced such times as well so you understand. My stress level has been up but somehow my body went into an adaptive stage of coping. Sometimes exhaustion was my companion too. But staying focused on the day ahead of me became my plan of operation and so far this has been a very helpful course to take. Here is a subject that I want to address again that our OT friend Jenn questioned on the Forum. My overall observation made after living with a tremor disorder for 27 years , concerns our abnormal stress response levels, as well as our abnormal lack of balance plus other markers. We do not have normal defense or corrective reaction. This makes me think perhaps the nervous/endocrine message systems need to be looked at collectivity in tremor disorders. I will continue to be with all of you on the Forum . The more we report our experiences and histories with OT the more we will provide better understanding....... and that is something we all need desperately!
DISCLAIMER: Any information provided on this website should not be interpreted as a substitute for physician evaluation or treatment. YOU SHOULD ALWAYS SEEK THE ADVICE OF A HEALTH CARE PROFESSIONAL AND PRACTITIONER. The author of this website shall have no liability whatsoever for direct or indirect, special or consequential damages relating in any way to the use of information provided or resulting from any defects or failure of this information. Nothing on this WebSite should be considered "medical advice". Such Advice can only be given by a physician who is experienced with Orthostatic Tremor. |