Orthostatic Tremor
Orthostatic Tremor
Information, News, and Research
My personal experience with Orthostatic Tremor
The following is a diary of Gloria's experience with OT, from the misdiagnoses in the early entries at the top of the page, and then scroll down to my latest posts to read all that has happened in between. Gloria passed away in early 2023, she never gave up hope, and she loved everyone that she met along her journey with OT.
My Experience: March, 2000
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.
Although OT Resources is not quite two years old, it is amazing and important to note that OT awareness has reached worldwide scope and input. This includes the wonderful interest from the medical and research community as well. Gloria
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. Unfortunately, we have very few natural reactive defenses in such situations.
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! As always...........Gloria
UPDATE JANUARY 6 , 2009
2008 is finished and hopefully our World will heal and the human race will go forward as a better place.
But on a closer look at life’s natural cycles, we as human beings are confronted with personal challenges. My 2008 challenges was the passing of my husband and my bout with cancer. But as reality has it’s way, nothing excuses us from our OT. However, we as the OT community really worked together in 2008 and much was accomplished by us this past year. I will highlight them but suggest you go back to the Forum and review them again and just feel the HOPE that has entered our lives.
We had our first meeting in Rochester, MM ( spearheaded by Peggy Whitta) . Meeting with other OT people is the greatest experience that you can have as a person suffering with OT. It removes the sense of isolation and replaces it with a shared identity. We had a wonderful experience of having Dr. Matsumotto from the Mayo Clinic as our speaker. The exchange between Dr. Matsumotto and us was mutually rewarding. Also during the year we have had the pleasure of hearing from Dr. Diego Torres-Russotto an outstanding neurologist who’s studies and understanding of OT is very promising in our future. I recommend that if you have not already viewed his video that you go to the Homepage of the website and under ( News, Articles and Links) you can access his video.
Also during the year our OT friend ( Lorna) alerted us to an article that she found in her newspaper in Australia about Unique Living Brain mapping that is being developed by the Howard Florey Institute in Melborne that will help with diagnosing and treating neurological disorders. This article is also posted in the same area of the home page. Last year with the help of our member Pat Whitney we established a funding program with NORD ( National Organization of Rare Diseases) a well honored charity both nationally and internationally. For more information and how to donate please go to the Forum.
Although 2008 was a World Class bummer, the OT community can be proud of itself and we have every reason to have HOPE in our future. As a community if everyone informs as many people as possible about OT within their space (at work, social contacts, clubs, newspapers, family etc. this will make our environment easier to live with. We know that the medical community needs to learn more about OT and the only way this will happen is for us to be accessible to them to learn about our lives and our symptoms.
As always, Gloria
UPDATE September , 2009
After 9 years of reading the communications from OT friends throughout the world, it is very clear that we have become a very strong and thoughtful community. Because there is little medical advise available for us we are supplementing that by supporting each other. Also I’m proud to say that we have heard from 31 countries so I no longer believe that we are as rare as we were described a few years ago.
Here is something everyone should try to establish in their State or territory. Recently I had the pleasure of having three OT friends at my house for lunch, Rita, Kaylie and Harriet. Rita and Kaylie live about 40 minutes from my house and Harriet over an hour. We all agree that we hope that more people will join us so we can form a support group here in central New Jersey. If there are other OT members who live within a reasonable distance and wish to join us send me an email and we will include you the next time we meet.
I feel it is important for me to remind everyone again to make an effort to walk briskly everyday, it is a must if you don’t do anything else in the way of exercise. I’m lucky to have an indoor shopping Mall near me where I have joined a ” walking group” which is especially good on bad weather days. In September I will start “ sitting down Yoga” lessons. All of these efforts are some of the things we can do for maintenance of our leg muscles because they atrophy quickly with OT if we don’t stick to a constant program. Also even though there is constant work at my desk, I make an effort to get out of the house at least a part of the day. Generally in the mornings because physically I feel I can cope with the restrictions that OT places on me. Please do not choose a sedentary life style, mentally and physically it is not beneficial in any way.
PLEASE remember to donate to our/your OT research fund, you can do it from the chair that you are sitting in reading this message, that’s how easy it is. Just click on Donate OT Research on the top of the Home page and it will take you directly to the page of “how to donate”. We all need research that will give us relief from this life changing disorder. To be continued, Gloria
As always, Gloria
UPDATE April , 2011
I think that it is now time for me to revisit the beginning of OT in my life for you to show how the last eleven years with the beginning of the website and my OT story proved to be the story of so many. I have had the symptoms of OT for almost 30 years. When I first felt the feelings of not being able to stand the symptoms were not as strong for about five to six years but after that they progressed quite quickly to my present stage of only seconds to stand. I believe this is the final stage of progression. Early on in my journey to find what was causing this, I was diagnosed with lumbar stenosis and surgery was performed with the thought that too would end my standing problem as well but of course, it did not. My search continued and was misdiagnosed with Parkinson’s. I started to study as much information as I could gather about Parkinson’s and realized I did not fit the Parkinson’s profile but still did not know what I had. In 2000 when I was correctly diagnosed it was the end of living with symptoms without a name but little more. It was a “high and a low” experience when I heard my diagnosis. However, we who have OT are lucky that I have a son with great foresight and internet expertise and he suggested that I have a website. Since then telling my story has been validated by the many hundreds who have reported their OT experiences. My early learning process was confronted with old medical information that we were a variant of Essential Tremors however collected information and study through these years has showed that we are a separate entity, a concept now accepted by most clinicians .
I have learned through the years how we live and cope with OT is strongly dictated by our individual personalities. Oh, I have my days when I have said “Why me?” and I don’t want to deal with it, but those emotions do not last long in this body because my goal is to remain as independent as possible. I will not let OT control me more than the physical aspects that we were cursed with so I’m always looking for new interests that are doable and finding new ways to cope with our OT to get through the everyday.
I wish all of my OT friends will become PROACTIVE to fight our/your disorder in every way you can think of , big or small. It is a big battle and EVERYONE must be apart of it. If you do not participate you are hurting yourself and your future. To be continued, Gloria
As always, Gloria
UPDATE September, 2011
Another page in my life with OT from the soggy State of New Jersey, USA . I guess some of you might have heard on the news that NJ got hit rather hard with Hurricane Irene. I was very lucky, but sadly with only the loss of a 100 year old Ash tree in my backyard however there were places in NJ where people were flooded out of their homes. The eye of the storm arrived during the night and I slept through it thanks to the Gabapentin that I take for my OT. Now it can be rated great for sleeping through hurricanes. Truthfully at this point in life my limitations of OT are now familiar and anticipated patterns of responses from my legs as the daily situations of challenge and stress presents itself. It is now “ my normal day” not the one I took for granted pre-OT days. I have had OT for 30 years and because of my ever present OT I have tried to learn the “ subject ” well so I can do as many things in life as possible but do them differently. I plan my days and allow more time to accomplish what I need to do. To accomplish everything on the list of the day is very gratifying but I excuse myself if I can’t do it all.
However, looking on the brighter side of things to come in our lives is the launching of our first research study. It will be interesting see what the chosen approach of study will be and what the results might mean for us. This is the first fund that was raised by a group of OT people for study. It is a beginning and something that we need to continue as part of our future.
Thankfully we have grown to be an amazing group of members and friends but there are still some people out there that benefit from the information on the site but do not register or contribute. If you are new to the site or someone that never registered please do and add your location to your profile. ( only state or territory and country is necessary, not full addresses.) The more OT people that stand up to be counted the stronger we will be! Please take the time now to register and participate, everyone benefits from an active OT community.
I’m happy to report our credibility is now recognized by many of the leading Neurological Movement Disorder Hospitals and Institutions in the US who refer the patients they diagnose with OT to our site for help, sharing stories and coping skills.
To be continued, Gloria
UPDATE January, 2013
I’m so pleased to say 2012 proved to be a very productive and exciting year for Orthostatic Tremor ! :
With donations from the OT community to the National Organization of Rare Disorders (NORD), two grants were awarded to research OT in Australia and Paris.
Also, this past October, .... 23 of us with OT, along with many companions met in Omaha to participate in Dr. Diego Torres-Russotto”s first clinical trials on OT at the University of Nebraska Medical Center. This was our 3rd meeting but the first including a study. The organization of this event was a HUGH job but thanks to Peggy Whitta it was well done. All of us who participated recommend the experience!
We reconnected with OT friends that we had met at previous meetings and made new friends as well, sharing our challenges, concerns and coping strategies. Personally I was overwhelmed emotionally with joy when entering the meeting room realizing the sense of being there I was in my world! The minutes of the meeting were skillfully taken by Pat Whitney for all to review on the website along with a picture gallery of the attending. Another feature was the grand coverage of this event by The Canadian Broadcasting Company and Erik White who created a documentary on Orthostatic Tremor that was broadcast throughout Canada and on the internet for the entire world to hear.
Because of those of us who made the trip Omaha it became evident by our presence and participation we were showing a united strength and power to fight the OT in our lives and establish a new station of connection in this world. Another feature of strength that was appreciatively noted by Dr. R in his presentation was that we are all “resources” of OT information. And this will be invaluable for on going clinical trials.
You should be proud of being part of a growing voice and support group for OT. For helping to advance the awareness of OT and giving support to new friends with OT. Thanks to all that donated their time and talent to making this a very exciting year for OT!!!!!!!!!!!!!!!!
To be continued, Gloria
UPDATE May, 2013
One of my priorities in life is protecting my mobility from the debilitating effects of OT. With aging, it does get more difficult but I try to manage other health problems separate from my OT symptoms.
Recently I was experiencing pain in my legs and lower back, but knowing the symptoms of OT very well ( for 30 yrs.) , I felt the pain was a separate issue and discussed my thoughts with my neurologist. Our combined thoughts concluded the problem was coming from my spine. My doctor reminded me that on my MRI three years ago it showed the beginning of infiltration of osteoarthritis in the base of the spine. I also have a history of spinal stenosis. My doctor prescribed a routine of comprehensive PT to strengthen the legs, core muscles and lower back. The treatment has helped tremendously with the pain, but I must be conscientious with working out to maintain pain-free mobility. Walking is still a great part of my program but on rainy days my recumbent bike works just fine!
Remember my OT friends, it is important to build strength as a community and increase the awareness of OT, so please register on the website if you are not already a member. Post your OT history and location which is important to the medical community. And a reminder to our OT friends who have been members for years, please post frequently and tell us how you are traveling thru OT life, we love to hear your thoughts & updates !
To be continued, Gloria
UPDATE February 1, 2014
What a Winter this has been not a good one for doing a safe walking program for my legs, the streets were narrowed by snow and ice. Nonetheless, I did do my ” before I got out of bed” leg exercising and stretching every morning followed by time on my recumbent bike in the den. And regardless of weather a must of my everyday for years has been thinking thru what needs to be done that day and what I might encounter makes for an easier day. Over standing our time and “freezing in place” is a big stressor as we all know so I watch my timing and try avoiding the episodes before they begin. I’m praying for an early Spring so the gardener in me can get to her work outside, ( on a gardening stool of course ). I know from the input from our OT Community I have a lot of gardening OT friends in different parts of the world .
I think of how we have become an inspiring OT Community of Friends, growing in strength, information and helping each other. By being a registered member we no longer have the feeling of loneliness that plagued us. If you are not registered I recommend that you do so. Numbers count to the medical community for recognition as a disorder and more of our known presence will speed up our cause of going forward with research and awareness !!!!!! EVERYONE with OT needs to be part of this. Also like most illnesses WE must help our own cause by supporting OT funding so please give to our OT RESEARCH FUND with NORD. “ How To”: information can be found on the Forum...... ( personally, I give on a continuing schedule. )
Always look forward to your postings on the Forum ! ......... To Be Continued, Gloria
UPDATE March 3, 2015 - 15 years of OrthostaticTremor.org
In March of 2000 the OrthostaticTremor.org website was launched to build awareness of OT, and this March is the 15th anniversary.
Even though I had Orthostatic Tremor for many years prior, it wasn't until 2000 when I was diagnosed. At that time there was very little information available and very few doctors had heard of OT. It was a “hidden disease” making it hard to be identified and was greatly misdiagnosed. Searching the internet today for Orthostatic Tremor is very different from how it was when I returned home from the doctor with my diagnosis. And, in March of 2000, that void sparked the need to start the website. The goal was to build a community of sharing, and most important to create awareness of this rare disease.
I’m writing this update looking back in time where I was with OT “then” and “now”. The need to learn coping skills was less in the early stages of my OT adventure because of the longer time that I could stand before the onset of contracting leg muscles, and tremors took hold! However, the progression of OT over time has turned minutes into seconds. And now, coping with this disease is a challenge every day. Also years have brought on other health issues that compounds and exacerbates the effects of OT. Certainly this has meant accomplishing much less during my average day, plus the emotional stress that sometimes becomes a part of it. I have adapted as best as I can and recently to cope with heavy shopping and errands I have now engaged someone to help me with such chores.
I am very grateful to the efforts of everyone that have formed and attended meetings around the world, for the OT research, and happy for those that have been fortunate to have met someone else with OT. Thanks to all who found the website and shared their OT experiences on the forum. This has been group effort of building public awareness.
It is important to continue to support funding of the research with the UNMC (University of Nebraska Medical Center) and NORD (National Organization of Rare Diseases). With your support brings hope for the future.
To be continued .......... Gloria
UPDATE February 3, 2017
If someone asked me now how I go thru my days living with OT in my 80’s, I would answer I’m physically exhausted earlier in the day because of the now VERY shortened standing time. However I’ve lived in the same house for 59 years and the last 30+ of those years with OT. Lucky for me my house has proven to be one I can maneuver with my OT although that has been limited to seconds for stop and go movements that are normally done in a house. My overall health is good and the only health issues are bone on bone knees and osteoporoses entering the base of my spinal cord. However, here is something I can not explain I never get things like colds or headaches. ???????
Another physical part of my OT life that has been challenged is my joy of being outdoors with “Mother Nature” working in my garden sitting on a stool . Lots of walking with a good heel toe pace and deep breathing is still the best.
Gloria
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.
Although OT Resources is not quite two years old, it is amazing and important to note that OT awareness has reached worldwide scope and input. This includes the wonderful interest from the medical and research community as well. Gloria
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. Unfortunately, we have very few natural reactive defenses in such situations.
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! As always...........Gloria
UPDATE JANUARY 6 , 2009
2008 is finished and hopefully our World will heal and the human race will go forward as a better place.
But on a closer look at life’s natural cycles, we as human beings are confronted with personal challenges. My 2008 challenges was the passing of my husband and my bout with cancer. But as reality has it’s way, nothing excuses us from our OT. However, we as the OT community really worked together in 2008 and much was accomplished by us this past year. I will highlight them but suggest you go back to the Forum and review them again and just feel the HOPE that has entered our lives.
We had our first meeting in Rochester, MM ( spearheaded by Peggy Whitta) . Meeting with other OT people is the greatest experience that you can have as a person suffering with OT. It removes the sense of isolation and replaces it with a shared identity. We had a wonderful experience of having Dr. Matsumotto from the Mayo Clinic as our speaker. The exchange between Dr. Matsumotto and us was mutually rewarding. Also during the year we have had the pleasure of hearing from Dr. Diego Torres-Russotto an outstanding neurologist who’s studies and understanding of OT is very promising in our future. I recommend that if you have not already viewed his video that you go to the Homepage of the website and under ( News, Articles and Links) you can access his video.
Also during the year our OT friend ( Lorna) alerted us to an article that she found in her newspaper in Australia about Unique Living Brain mapping that is being developed by the Howard Florey Institute in Melborne that will help with diagnosing and treating neurological disorders. This article is also posted in the same area of the home page. Last year with the help of our member Pat Whitney we established a funding program with NORD ( National Organization of Rare Diseases) a well honored charity both nationally and internationally. For more information and how to donate please go to the Forum.
Although 2008 was a World Class bummer, the OT community can be proud of itself and we have every reason to have HOPE in our future. As a community if everyone informs as many people as possible about OT within their space (at work, social contacts, clubs, newspapers, family etc. this will make our environment easier to live with. We know that the medical community needs to learn more about OT and the only way this will happen is for us to be accessible to them to learn about our lives and our symptoms.
As always, Gloria
UPDATE September , 2009
After 9 years of reading the communications from OT friends throughout the world, it is very clear that we have become a very strong and thoughtful community. Because there is little medical advise available for us we are supplementing that by supporting each other. Also I’m proud to say that we have heard from 31 countries so I no longer believe that we are as rare as we were described a few years ago.
Here is something everyone should try to establish in their State or territory. Recently I had the pleasure of having three OT friends at my house for lunch, Rita, Kaylie and Harriet. Rita and Kaylie live about 40 minutes from my house and Harriet over an hour. We all agree that we hope that more people will join us so we can form a support group here in central New Jersey. If there are other OT members who live within a reasonable distance and wish to join us send me an email and we will include you the next time we meet.
I feel it is important for me to remind everyone again to make an effort to walk briskly everyday, it is a must if you don’t do anything else in the way of exercise. I’m lucky to have an indoor shopping Mall near me where I have joined a ” walking group” which is especially good on bad weather days. In September I will start “ sitting down Yoga” lessons. All of these efforts are some of the things we can do for maintenance of our leg muscles because they atrophy quickly with OT if we don’t stick to a constant program. Also even though there is constant work at my desk, I make an effort to get out of the house at least a part of the day. Generally in the mornings because physically I feel I can cope with the restrictions that OT places on me. Please do not choose a sedentary life style, mentally and physically it is not beneficial in any way.
PLEASE remember to donate to our/your OT research fund, you can do it from the chair that you are sitting in reading this message, that’s how easy it is. Just click on Donate OT Research on the top of the Home page and it will take you directly to the page of “how to donate”. We all need research that will give us relief from this life changing disorder. To be continued, Gloria
As always, Gloria
UPDATE April , 2011
I think that it is now time for me to revisit the beginning of OT in my life for you to show how the last eleven years with the beginning of the website and my OT story proved to be the story of so many. I have had the symptoms of OT for almost 30 years. When I first felt the feelings of not being able to stand the symptoms were not as strong for about five to six years but after that they progressed quite quickly to my present stage of only seconds to stand. I believe this is the final stage of progression. Early on in my journey to find what was causing this, I was diagnosed with lumbar stenosis and surgery was performed with the thought that too would end my standing problem as well but of course, it did not. My search continued and was misdiagnosed with Parkinson’s. I started to study as much information as I could gather about Parkinson’s and realized I did not fit the Parkinson’s profile but still did not know what I had. In 2000 when I was correctly diagnosed it was the end of living with symptoms without a name but little more. It was a “high and a low” experience when I heard my diagnosis. However, we who have OT are lucky that I have a son with great foresight and internet expertise and he suggested that I have a website. Since then telling my story has been validated by the many hundreds who have reported their OT experiences. My early learning process was confronted with old medical information that we were a variant of Essential Tremors however collected information and study through these years has showed that we are a separate entity, a concept now accepted by most clinicians .
I have learned through the years how we live and cope with OT is strongly dictated by our individual personalities. Oh, I have my days when I have said “Why me?” and I don’t want to deal with it, but those emotions do not last long in this body because my goal is to remain as independent as possible. I will not let OT control me more than the physical aspects that we were cursed with so I’m always looking for new interests that are doable and finding new ways to cope with our OT to get through the everyday.
I wish all of my OT friends will become PROACTIVE to fight our/your disorder in every way you can think of , big or small. It is a big battle and EVERYONE must be apart of it. If you do not participate you are hurting yourself and your future. To be continued, Gloria
As always, Gloria
UPDATE September, 2011
Another page in my life with OT from the soggy State of New Jersey, USA . I guess some of you might have heard on the news that NJ got hit rather hard with Hurricane Irene. I was very lucky, but sadly with only the loss of a 100 year old Ash tree in my backyard however there were places in NJ where people were flooded out of their homes. The eye of the storm arrived during the night and I slept through it thanks to the Gabapentin that I take for my OT. Now it can be rated great for sleeping through hurricanes. Truthfully at this point in life my limitations of OT are now familiar and anticipated patterns of responses from my legs as the daily situations of challenge and stress presents itself. It is now “ my normal day” not the one I took for granted pre-OT days. I have had OT for 30 years and because of my ever present OT I have tried to learn the “ subject ” well so I can do as many things in life as possible but do them differently. I plan my days and allow more time to accomplish what I need to do. To accomplish everything on the list of the day is very gratifying but I excuse myself if I can’t do it all.
However, looking on the brighter side of things to come in our lives is the launching of our first research study. It will be interesting see what the chosen approach of study will be and what the results might mean for us. This is the first fund that was raised by a group of OT people for study. It is a beginning and something that we need to continue as part of our future.
Thankfully we have grown to be an amazing group of members and friends but there are still some people out there that benefit from the information on the site but do not register or contribute. If you are new to the site or someone that never registered please do and add your location to your profile. ( only state or territory and country is necessary, not full addresses.) The more OT people that stand up to be counted the stronger we will be! Please take the time now to register and participate, everyone benefits from an active OT community.
I’m happy to report our credibility is now recognized by many of the leading Neurological Movement Disorder Hospitals and Institutions in the US who refer the patients they diagnose with OT to our site for help, sharing stories and coping skills.
To be continued, Gloria
UPDATE January, 2013
I’m so pleased to say 2012 proved to be a very productive and exciting year for Orthostatic Tremor ! :
With donations from the OT community to the National Organization of Rare Disorders (NORD), two grants were awarded to research OT in Australia and Paris.
Also, this past October, .... 23 of us with OT, along with many companions met in Omaha to participate in Dr. Diego Torres-Russotto”s first clinical trials on OT at the University of Nebraska Medical Center. This was our 3rd meeting but the first including a study. The organization of this event was a HUGH job but thanks to Peggy Whitta it was well done. All of us who participated recommend the experience!
We reconnected with OT friends that we had met at previous meetings and made new friends as well, sharing our challenges, concerns and coping strategies. Personally I was overwhelmed emotionally with joy when entering the meeting room realizing the sense of being there I was in my world! The minutes of the meeting were skillfully taken by Pat Whitney for all to review on the website along with a picture gallery of the attending. Another feature was the grand coverage of this event by The Canadian Broadcasting Company and Erik White who created a documentary on Orthostatic Tremor that was broadcast throughout Canada and on the internet for the entire world to hear.
Because of those of us who made the trip Omaha it became evident by our presence and participation we were showing a united strength and power to fight the OT in our lives and establish a new station of connection in this world. Another feature of strength that was appreciatively noted by Dr. R in his presentation was that we are all “resources” of OT information. And this will be invaluable for on going clinical trials.
You should be proud of being part of a growing voice and support group for OT. For helping to advance the awareness of OT and giving support to new friends with OT. Thanks to all that donated their time and talent to making this a very exciting year for OT!!!!!!!!!!!!!!!!
To be continued, Gloria
UPDATE May, 2013
One of my priorities in life is protecting my mobility from the debilitating effects of OT. With aging, it does get more difficult but I try to manage other health problems separate from my OT symptoms.
Recently I was experiencing pain in my legs and lower back, but knowing the symptoms of OT very well ( for 30 yrs.) , I felt the pain was a separate issue and discussed my thoughts with my neurologist. Our combined thoughts concluded the problem was coming from my spine. My doctor reminded me that on my MRI three years ago it showed the beginning of infiltration of osteoarthritis in the base of the spine. I also have a history of spinal stenosis. My doctor prescribed a routine of comprehensive PT to strengthen the legs, core muscles and lower back. The treatment has helped tremendously with the pain, but I must be conscientious with working out to maintain pain-free mobility. Walking is still a great part of my program but on rainy days my recumbent bike works just fine!
Remember my OT friends, it is important to build strength as a community and increase the awareness of OT, so please register on the website if you are not already a member. Post your OT history and location which is important to the medical community. And a reminder to our OT friends who have been members for years, please post frequently and tell us how you are traveling thru OT life, we love to hear your thoughts & updates !
To be continued, Gloria
UPDATE February 1, 2014
What a Winter this has been not a good one for doing a safe walking program for my legs, the streets were narrowed by snow and ice. Nonetheless, I did do my ” before I got out of bed” leg exercising and stretching every morning followed by time on my recumbent bike in the den. And regardless of weather a must of my everyday for years has been thinking thru what needs to be done that day and what I might encounter makes for an easier day. Over standing our time and “freezing in place” is a big stressor as we all know so I watch my timing and try avoiding the episodes before they begin. I’m praying for an early Spring so the gardener in me can get to her work outside, ( on a gardening stool of course ). I know from the input from our OT Community I have a lot of gardening OT friends in different parts of the world .
I think of how we have become an inspiring OT Community of Friends, growing in strength, information and helping each other. By being a registered member we no longer have the feeling of loneliness that plagued us. If you are not registered I recommend that you do so. Numbers count to the medical community for recognition as a disorder and more of our known presence will speed up our cause of going forward with research and awareness !!!!!! EVERYONE with OT needs to be part of this. Also like most illnesses WE must help our own cause by supporting OT funding so please give to our OT RESEARCH FUND with NORD. “ How To”: information can be found on the Forum...... ( personally, I give on a continuing schedule. )
Always look forward to your postings on the Forum ! ......... To Be Continued, Gloria
UPDATE March 3, 2015 - 15 years of OrthostaticTremor.org
In March of 2000 the OrthostaticTremor.org website was launched to build awareness of OT, and this March is the 15th anniversary.
Even though I had Orthostatic Tremor for many years prior, it wasn't until 2000 when I was diagnosed. At that time there was very little information available and very few doctors had heard of OT. It was a “hidden disease” making it hard to be identified and was greatly misdiagnosed. Searching the internet today for Orthostatic Tremor is very different from how it was when I returned home from the doctor with my diagnosis. And, in March of 2000, that void sparked the need to start the website. The goal was to build a community of sharing, and most important to create awareness of this rare disease.
I’m writing this update looking back in time where I was with OT “then” and “now”. The need to learn coping skills was less in the early stages of my OT adventure because of the longer time that I could stand before the onset of contracting leg muscles, and tremors took hold! However, the progression of OT over time has turned minutes into seconds. And now, coping with this disease is a challenge every day. Also years have brought on other health issues that compounds and exacerbates the effects of OT. Certainly this has meant accomplishing much less during my average day, plus the emotional stress that sometimes becomes a part of it. I have adapted as best as I can and recently to cope with heavy shopping and errands I have now engaged someone to help me with such chores.
I am very grateful to the efforts of everyone that have formed and attended meetings around the world, for the OT research, and happy for those that have been fortunate to have met someone else with OT. Thanks to all who found the website and shared their OT experiences on the forum. This has been group effort of building public awareness.
It is important to continue to support funding of the research with the UNMC (University of Nebraska Medical Center) and NORD (National Organization of Rare Diseases). With your support brings hope for the future.
To be continued .......... Gloria
UPDATE February 3, 2017
If someone asked me now how I go thru my days living with OT in my 80’s, I would answer I’m physically exhausted earlier in the day because of the now VERY shortened standing time. However I’ve lived in the same house for 59 years and the last 30+ of those years with OT. Lucky for me my house has proven to be one I can maneuver with my OT although that has been limited to seconds for stop and go movements that are normally done in a house. My overall health is good and the only health issues are bone on bone knees and osteoporoses entering the base of my spinal cord. However, here is something I can not explain I never get things like colds or headaches. ???????
Another physical part of my OT life that has been challenged is my joy of being outdoors with “Mother Nature” working in my garden sitting on a stool . Lots of walking with a good heel toe pace and deep breathing is still the best.
Gloria
ABOUT THIS SITE:
The purpose of this site is to share information about Primary Orthostatic Tremor (OT).
The purpose of this site is to share information about Primary Orthostatic Tremor (OT).
This website is intended to be an informal guide. Any information relating to a therapy, treatment or diagnosis must be received with caution. Only a physician is authorized to confirm its validity. It must not, under any circumstances, delay or replace the advice of the treating physician. And is not a substitute for medical advice.