I was diagnosed with essential tremor at 16 years of age. Other than my mother, I thought I was the only person alive with this condition. It was confusing, embarrassing and frustrating. Since joining IETF, I have learned so much about ET. The International Essential Tremor Foundation supports members with ET but also sponsors scientific research that is bringing about changes for those suffering from this condition. The foundation staff is amazing, dedicated and forward thinking.
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Personally this page has been a great blessing because it helped me to know a little more about my illness and to know that there are other people who are struggling with this situation motivates me to find alternatives to handle it. Thank you very much to this foundation for helping others. I serve God through dance and it is very difficult for my problem but this foundation has helped me to know that if I can cope with God's help and the necessary information that this page provides me
Have been a member for many years. Have been dx at 30 years but shakey since 20. This is the one place that gives information for all ages. More information about it needs to get ut to the general public, most are ignorant of ET. Only know Parkinson's! I am a retired RN and hope new nurses are instructed about ET.
I have had Essential Tremors for thirty years. I had been on all of the medication prescribed for them and eventually they had stopped working for me. I found the Essential Tremor website and began researching all of the different solutions including DBS( deep brain stimulation) surgery. My neurologist had suggested this surgery to me in 2009 and I had told her no but as I read the results and watched the videos of the people who had the surgery, I began to change my mind and decided to try it. I had the surgery in Omaha on July 26 and when my neurologist turned on my stimulator on August 30, I no longer had any tremors in my hands or my voice. I think the International Essential Foundation website was the turning point for me and it has changed my life.
my experience with the international essential tremor Foundation has been life changing I found it after I was diagnosed in 2012 with et and was inspired to raise awareness and be apart of their support group online. Not one of my friends or family beleived that I had et they thought I was making it up to get attention. Needless to say I got rid of all the negative people in my life and raising awareness in my neighborhood about et to eventually start a support group in my area. This would not have been possible if I did find the ietf who have given me total support.
I am support group leader of IETF from India. I have always been supported and guided by IETF. This is the best and oldest organization for people with Essential Tremor with latest Information of medications and treatments available for ET .This Organization is working for ET from 1988, before I was born, its great! They provide there best help and assistance to execute any idea which I have and can raise awareness for ET.
They have helped me get a Support Group going. They have been very helpful. The website is OUTSTANDING! It has LOTS of good info. I have really appreciated the support that I have gotten. Thanks IETF.
My son was diagnosed with ET when he was 6. The caring people at IETF sent us information on everything from dealing with ET to helping teachers with students who have ET. They put out info on finding Doctors, support groups, DBS, and have a great magazine called Tremor Talk. There are Scholarships, March awareness month, and I really can't imagine how we would have gotten all the help and support with this life altering condition with out them.
I am just now signing up for any organizations that can provide information, or help with ET. I have had the tremors all my life now that I am getting older and have had some very stressful events occur my tremors are effecting my personal life and my job drastically. I am seeing a Neurologist and have tried all the meds, but for some reason or another I have had severe side effects. I do take the Xanax and have for many years I am aware of the long term side effects, but it is the ONLY thing that allows me to function at a minimal.
My doctor told me that the FDA approved an ultrasound procedure and the closest medical center preforming it is Stanford Medical Center. I have emailed them several weeks ago and I am very interested in a less invasive procedure than Deep Brain Stimulation. I have not heard back; however, I am so looking forward to this treatment it sounds promising.
I am also dealing with lower back problems and surgery has been suggested by many doctors. I would like to take of my health issues and have the results be successful, so I can function in my personal life and at work. My job is getting increasingly challenging with the back pain and my tremor's I do not know how much longer I can continue to work. It has become very difficult. :(
If anyone has any other information, or how I can get a response from Stanford please let me know. I live by myself and it is challenging as you all know to take care of everyday life situations. I am trying to stay positive while I wait to hear back from Stanford.
Any suggestions please share it would be much appreciated.
I was finally diagnosed with ET (hand tremor) in 1983 at the age of 32. I was about 10 years old when I first noticed that my hands would shake, especially in stressful situations. At the time (and for many years), I thought it was just a "nervous condition". My father also had a hand tremor so I thought I had inherited his nervousness. I have had a wonderful response to my hand tremor using Propranalol - feel extremely fortunate! However, in my late 30s, I started with a tremor also in my head. It has been a long journey with an amazing Neurologist to finally have some relief from my head tremor with Botox injections in my neck. My son, now 39, also has a hand tremor that started at the age of 3. He accepts the tremor as it is & has made a choice not to seek treatment at this point in his life. I have been a member of the IETF for many many years now and have been so grateful for ALL the information this organization provides... and for their efforts to do continued research for better ways to live with ET.
IETF is an excellent source of information for those who want to learn more about essential tremor and how to cope with it. More importantly, IETF funds essential tremor research and advocates for additional government funding to treat and cure ET.
I was diagnosed with "benign familial tremor", now known as Essential Tremor (ET) in my 20s, although it had manifested earlier. All through my life I'd hidden it. When a support group sponsored by the IETF started within 5 miles of my house when I was in my late 50s, I was elated that there were other folks with ET and excited to learn more about it. So, I volunteered to be co-leader of the group. The materials and support provided by IETF to the local support groups are excellent. It was through the IETF and the support group that I met doctors and other people and learned enough to be confident enough to go through with Deep Brain Surgery (DBS) or brain pacemaker surgery this past month. The DBS has made a tremendous difference for the tremor on my left side. I will be talking to folks next month about my experience and the IETF volunteer coordinator is sending out a flyer for me to folks in my area.
I once had a beautiful hand writing that amazed people. I enjoyed adapting my penmanship and creating different styles. Then my hands starting shaking and I could hardly write legibly. I was fortunate to find an excellent neurologist who also has ET. He understands the physical as well as the social difficulties.
When I found an ET support group, I was relieved to talk to others who understood. And even more happy to find the IETF. I wouldn't wish this on anyone, but am so thankful to learn how to live with this condition.
The IETF has made living with ET much easier for me. I was diagnosed when I was about 35 but I had noticed this condition earlier and also had seen it in my Dad. I have 3 brothers and 2 sisters. All but one has ET. For me, it has progressed as I've aged and really only hinders me when eating, drinking, and personal grooming. However, due to the nature of this condition, when I have to speak in front of a group of people or play my guitar in public it can become a nightmare. The IETF through literature and posters they've made available have enabled me to increase awareness in my church, at my workplace, and in my circle of friends and family. This has limited the amount of questions I get asking me "why are you so nervous" or "why do you shake so much". Because of the IETF I have been able to consider myself "normal" and this has helped boost my confidence. This foundation has been a Godsend and I look forward to seeing more of what they can accomplish. Al Johnson
Where would I be without the IETF? Very lost and very confused and fully without support.... ET is a life altering neurological condition that affects our lives in so many ways and yet has not really been studied..doctors don't know much about it and aren't much help..it takes a movement disorder neurologist to really dx it really. So, many people don't know what they have and go through life suffering and isolated. The IETF is working to change that for us through research and support. They need funding to continue their great work. We need them!
The IETF is the first and last resort of anyone affected by ET or with a friend or relative who is affected. It is the best source of up-to-date info about all aspects of ET - symptoms, treatment, physicians, research, support groups, etc. The IETF is my plug-in to a huge network of people sharing my concerns about this widespread but little publicized condition.
I have supported them for many years. Their information is essential for understanding this condition. Without them I probably wouldn't have known about DBS surgery. I am now tremor free but will continue to support them. They help so many people.
IETF really working for the Essential Tremor worldwide whether it be Awareness,Supporting People who have ET ,finding a cause for ET.
They are working for ET with full energy and Enthusiasm .Its like family to me to whom I can share and can get Information.
A very dedicated organization. Up to date information, very knowledgeable.
I've had Essential Tremors for over 40yrs !! I thought I was the only one out their with it until IETF came along ! I had a lot of my dreams shot to hell ( like becoming a police officer when I got out of the Marines ) because of this. Not Abel to write or type makes it hard to even keep a job at my age, but through IETF there are a lot of people to talk to when the going gets ruff and they have gotten the word out so a lot more people know !! Thank you IETF... You know I once had an application ripped up in front of me after they just said they want me to start the next day !! They said write down some info , after I started to write they saw my hands shaking they ripped it up and said don't call us.....
This is a wonderful origination. I follow them religiously via FB and website, They have very informative seminars. I watch them for new aids to purchase for ET awareness, They are a blessing for answers to questions,
I became aware I had inherited my mom and maternal grandmother's tremor when I was 20 years of age. I am now 61 years of age. IETF has helped me to learn about the current research and what is happening in the area of treatment. Also I find hope and connection from this organization.
A coworker actually introduced me to the IETF, and it has opened up so many new friendships for me. I have had tremors since I was a child, and I always felt so alone, felt I was a young person trapped in an old persons body. Now thanks to "Tremor Talk", IETF's magazine, and the Facebook page, "Understanding Essential Tremors" I can talk with people who understand, who have been where I am, and it is truly a wonderful thing! Thank you IETF!!
I meet with others with Essential Tremor monthly and have lunch. We often have a speaker and chat about new findings and aids to help minimize our shaking. The Foundation is the organizer for these meet-ups, and it is one way they've helped me.
Before I was diagnosed with Essential Tremor, I'd only heard about it from articles about Katherine Hepburn many years ago. My diagnosis was a surprise to me, and when I talk to friends and family about it, no one seems to know anything about it either. Through the International Essential Tremor Foundation, I've found out that Essential Tremor is very common, but very little is known about it. To date, ET has attracted far less research funding than it seems like it should, since it affects so many people. The IETF has been very helpful in providing me with information about ET. I recently participated in a research study that I found out about after reading the IETF magazine. IETF is an invaluable resource, providing information to the many thousands of people who suffer from ET.
I was diagnosed 2 years ago with Essential Tremor and at the time I had no idea what that was. So after some time surfing the internet, I found the IETF website and became informed. I also contacted an Essential Tremor Support Group Leader who encouraged me to become a group leader for my area; the Palm Springs area. My group started with 2 and is now up to 14 since February 2014. The foundation is awesome and helps thousands of people! Their staff is always ready, willing, and able to assist whenever I need them. Thank you, Janine
The small but capable, hard-working and dedicated staff is responsive, supportive, knowledgeable and does great work for people with ET. Cathy Rice just staged a seminar for us in Albuquerque. It was well-organized and gave the audience the latest information on research and tools to help attendees cope with tremor. This is one of the few non-profits I trust with my donations, knowing the small amount I can give will be put to good use.
When first diagnosed with ET I felt alone and uninformed.
After some online research I found the IETF site to be very helpful and decided to join the organization. The current info. as well as the webinars they have offered have been MOST helpful as my neurologist and I work together to determine the best course of action for me. I have such difficulty writing, keyboarding, and eating, that support is very welcome, both physically and mentally.
The IETF is very up to date with news and research for Essential Tremors, which brings hope and an awareness that is much needed. I an very happy to say I know my donations are being put to good use because the IETF has helped fund vital research into this disease, furthering our journey towards a cure.
When I was first aware of my tremor 40 years ago, few people new anything about it including doctors. Thirty years later, when I was in need of more help, I was referred to Mayo clinic and was relieved to find neurologists who were very familiar with ET. Since then, the IETF has kept me abreast of research regarding new drugs and treatments, client studies, seminars, and real life experiences of other tremor sufferers. Jane
I am 67 years old. For many years, since I was in my twenties, I have had problems with my hands shaking lots. I sold tickets for an air line and always had people asking me why I was so nervous. It really make you feel depressed when you don't know what is wrong. My Father and Grandfather also shook. I just thought that it was something that I inherited and I did! Now my Brother, who is 54 and my Nephew, 32, also shake a lot. I even went to the Doctor to find out what it was. They didn't know. Finally, in the past about 15 years I was diagnosed with Essential Tremor. I went to one of the functions that Emory/IETF put on about 6 years ago, since then have been connected to their website. It is wonderful to know what is wrong with you. On the IETF website, I have found many things that help our entire family. Thanks to all involved, I know there are others out there that feel the same!
I receive too many appeals from health related support outfits, and they are duplicative.I am diagnosed
with several chronic (non treatable) issues and gladly give even when they mail multiple requests. Annoying : Yes! But one must keep informed about personal health.
The IETF organization, which has been helpful to me since it began, is more than expected of a foundation.
Especially since full cure is a goal even though ET is not deadly, yet the Board and its Director are
closely in touch with all ongoing investigations and makes personal contact between "victims" by every
possible means from area gatherings to Webinars with actual researchers. At 90 years even tips
on using my Chrome tablet are useful and appreciated.
Thomas F Conlon Cpt USArmy Retired
I am the most fortunate of ET patients, because at the time I was diagnosed with essential tremor, I was given material that introduced me to the IETF. I joined the foundation and from their literature I learned many facts of essential tremor that I had not known before. The most important fact, in my case, was to not be ashamed of my tremors. Without the embarrassment of my tremors, I was able to gain self-confidence and consequently was able to educate my family, friends, and strangers with presentations on essential tremor. The IETF has been the most valuable resource in providing guidance, written material for patients, doctors, and the public, and items such as pens and bookmarks to hand out at health fairs as well as brochures. The IETF has never let me down when I have requested an item or a notice to be sent out to members of a planned event or meeting. To me, it is the GREATEST of non-profits.
I was a dentist for thirty five years before I retired. Towards the end of my dental career I noticed that I had a slight tremor of my right hand sometimes after a difficult extraction of a tooth. After retiring I continued to have a slight tremor after doing any difficult or tiring activity that I would do with my right hand. I remembered that my father had some similar difficulties with his hands when he was very old. I realized that I had Essential Familial Tremor, but wasn't sure what to do about it. I looked it up on Google and somehow found out about the International Essential Tremor Foundation. Reading about the IETF, I decided to sign up for the Tremor Talk and make a donation. I have found the magazine very informative and and helpful in many respects. I read in the current issue of Tremor Talk that there will be a ET seminar in Philadelphia ( I live in Bucks County ) sometime in the near future and I hope to attend when the date is available. In the meantime I plan to see a Neurologist about medication for my tremor. Although my family doctor has prescribed Propanolol, the dosage is very small and she did not suggest building it up to higher levels. I hope to get more effective treatment from a Neurologist. Thank you for all you are doing to help those of us with E.T. Barry C. Platt, D.D.S.
Although I also donate, it is as a client with ET that I have found their help most useful. I have received a variety amount of information, books, cards, and lots of emails from IETF informing me about essential tremors (ET). All this information was passed along for free. They have coordinated internet lectures by professionals in the field. I have had the good fortune to make contact with a doctor on their medical advisory committee for a second opinion. IETF has many local chapters that can and do help people close to them.
I now realize that I am not the only one with this condition and as such have many I can reach out to for assistance when needed. While I may not be able to change the results, I have learned better on how to work around the issues and live a fulfilling life despite the difficulties.
I have an essential tremor. I learned about the association through google and I have found it is helpful to learn about research trials and assistive equipment and information about this condition. This is the most common movement disorder in the population and one which it was hard to find information about until I discovered this NGO. they are in Kansas and send me newletters regulariy and emails regularly. I am thankful for their support!
I am so grateful for IETF....have had ET for about 2 years and had slowly been restricting my activities & staying home way too much because I was embarrassed to be seen in public! Thanks to IETF I'm going out to eat again & over the Thanksgiving holidays I will be taking a plane trip with my son! I feel like I have rejoined the human race.
Before I found out about IETF, there really wasn't any information out there. My mother has the condition and she's in her 80s and one of my dear friends who is only 40 is also afflicted with this condition. I always look forward to the newsletter and the resources included.
I am not only a donor to the IETF but also one who has this condition. The organization and it's newsletter keeps me informed on the latest developments within the field, but it also helps to keep me aware of how others afflicted are handling and coping with it. It helps to put advancements within the field in front of me and advises me of volunteer experiments and studies that continue to research steps for an ultimate cure. Further, it lists doctors and contact information for those who specialize in the recognition and treatment of Essential Tremor, and also notes cities, dates and times of seminars devoted to discussions of it replete with speakers, written materials, etc. I couldn't more strongly endorse it's website or it's publication.
I've had ET for since I was a child and felt very alone, always having to explain that I wasn't nervous, I wasn't feeling cold, and I didn't have a hangover from too much alcohol. The IETF has me feel part off a larger community. It has introduced me to helpful products and techniques to cope, and kept me-up-to-date with the latest research. I look forward to every newsletter, and have recommended it to fellow sufferers.
IETF provided me with resources many health specialists could not. They went above and beyond to connect me with support groups, neurologists, and online groups. They are a great foundation that serve an oftentimes invisible population.
The IETF has helped me get information and is a fabulous website to referr doctors teachers or others for more information. I have had ET since childhood, have got a son with it, but didn't have a name to it until a couple of years ago. Tje information and tips om their website will help in letting my son deal in a better way. For us born with ET, there are a lot of challenges in daily life that we don't allways knows the cause of. Understanding this, threw information and "meeting" other ET-ers, enables to find solutions. The IETF has helped me find a FB-group, good support since there are no support groups in my country.
I was diagnosed with ET during my twenties - during my college years. At first, I thought the shaking was just from stress, but I noticed that it got worse with physical activity. My doctor told me that any type of stress on the body - emotional or physical, will increase ET symptoms.
Later, my mother was also diagnosed with ET. My doctor told me that ET symptoms generally get worse with age - and I can see that clearly in my 75 year old mother. Her head and voice shake significantly, and the ET clearly interferes with much of her daily life.
Right now, my ET mostly interferes with being able to write well and to eat or drink liquids. In my job as a school counselor, people often ask me if I am nervous - or if I am OK. I worry that they think I have an alcohol problem.
I am so glad that the International Essential Tremor Foundation is working to encourage and fund research for ET. I know that my children have a significant risk of developing ET, and I watch for symptoms with a sense of dread. I hope that they will not have to face the same struggles that I see my mother facing.
While I myself do not suffer from ET, a dear friend of mine does. I have seen how this organization has helped her and so many other in the most positive of ways. It is through such wonderful organizations as this that education and help is available. What a fabulous non-profit to donate to.
I've had ET since I was about 9 years old. Now at 83, my tremor is worse but my attitude is much better. The embarrassment I lived with especially in my teens and early career years is a thing of the past. Thanks to IETF I have come to understand that I have a medical condition and while it may create some awkward moments socially, I can simply explain it and any potential embarrassment vanishes.
I am currently a volunteer in a study sponsored by the U. of Miami Medical Center involving the effects of propanolol and alcohol on ET. The study is under the direction of neurologist Dr. Nahab, a member of the IETF board. While I probably won't reap the benefits of the study, it's entirely possible my grandchildren will. (ET tends to be familial. My Dad had it, two of my children slightly and now at least one grandchild.)
I gt diagnosed with ET about four years ago. Although its since developed into dystonic tremor. IETF has been ahuge help and support for me. I am 35 and I have four children. My eldest is 16 and she is showing very early signs of ET herself. I have learned a lot from the ietf website and has been really useful when going to the drs about it aswell. I thoroughly and whole heartedly recommend ietf to anybody that wants some extra help. Thanks guys for all you have done for me.
I've been "shakey" since my early 20's, but wasn't diagnosed with ET until I was in my 50's. Finding the IETF, becoming a member & receiving their emails has been a Godsend! Attending one of their local seminars led me to my current neurologist, who has me on the right medication to finally enable me to function somewhat reasonably. And while my tremors are by no means "gone", I can now get through my day much more comfortably. The IETF has made a major difference in my life.
The IETF provides wonderful educational seminars and written articles. The national staff takes a personal interest in its clients. I lived about 20 yrs. with Essential Tremor before finding out that it was a real condition, not just nervousness. Then I didn't learn about the IETF for about 10 more years. Reading the stories of others with this condition and finding out how they cope with various ET-related problems is very helpful. I love the IETF!
My late father had Parkinson's Disease and my brother and I both have ET. I am 69 and the tremors started over 30 years ago. They are increasing as time goes by. After discovering the IETF website I am greatly encouraged to know that there is an organization dedicated to this condition.
I am particularly interested in the progress of research of ET and assistive devices that are available to help us cope more effectively with tremors.
Although I am not involved in a group, I find the website to be very helpful. The sooner the spotlight of public awareness is focused on IETF the sooner a cure can be found for this frustrating and debilitating condition that affects millions.
To live with ET is like being in a bad dream from which you cannot awake. Watching my mother all those years, now living it , this organization validates those who suffer and those who stand helplessly watching. Their work is so valuable and needed, I rely on their knowledge and take comfort in knowing I am not alone. Please support this organization!
My tremor started showing up when I was in my late 30s. I am now 86 and was tested for Paarkinson's by my doctor about ten years ago and was finally told it was Essential Tremor or Familiar Tremor. I am on medication that slows it a little unless I get too nervous about something. I really appreciated learning about the International Essential Tremor Foundation last year and sent your info to my eldest son who is beginning the tremor.
I remember an aunt of my mother',s having it and realize it is inherited.
Most of my tremor is on the right side with soome on the left, Thankfully I am ambidexterous and am becoming more and more left handed in my work, etc.
I am on a very limited income but hope to help more later on.
When I was diagnosed with Essential Tremor my Neurologist sent me home with a bottle of pills and very little information. In my experience The IETF has filled a very big void left from the lack of information available in most doctors offices.
I am so hopeful that there will be a way for people like me to get rid of essential tremor. I have had it since I was twelve and have tried seven different medications in the last two years and none have worked. There are so many people with it and yet we do not have any sure fire medications to help. I think the IETF will be the one way we can all coordinate our efforts to make a change for over ten million people!
When I went to my neurologist's office for the first time, I saw a pamphlet about the IETF. This had to be in the 1980's. (I've been dealing with ET since age 11 & was diagnosed at age 19; I am now 63.) I joined the organization & began receiving information.
The IETF is the only organization educating & helping ET patients & families, increasing public awareness about ET, & funding research. I cannot believe how much the IETF has grown over the years, in scope, member size, & professionalism. They serve their members with such passion.
They have helped me become better educated about my condition, helped me find neurologists & neurosurgeons, introduced me to thousands of fellow ET sufferers so I realized I was not alone, & are always there to answer my questions or direct me to the right place.
I decided to become a Support Group Leader (SGL) in 2001, wanting so much to help others & increase awareness, after having been helped by the IETF. I led a group in Michigan for 6 years. Because of my successful work as a SGL, I was asked to join the board in 2002, I believe. I continue to actively serve on the board, currently as one of the past presidents.
I have had ET since age 11 and two years ago I found the IETF! I was so impressed by the organization that became a Support Group Leader. The IETF is a wonderful organization that provides coping skills and valuable information to members and non members. I've met so many wonderful people like. Me through the IETF and I'm proud to be a part of such a wonderful organization!!!
I had finally got my diagnosis after asking what was wrong with me for years. The MD's would just look at me when I told them my symptoms. Finally my MD retired and sold his practice to a large medical center. When I saw my PCP for the 1st time, I ask him, that since this hospital is suppose to know everything, I want to know what is wrong with me. (I was an RN and had worked rehab and never heard of it). The MD send me to a Neurologist and in 5 minutes I knew what was wrong. Then going on line I saw this foundation and joined. I attended a yearly information session @ Myrtle Beach, NC and was surprised at the no of patients were there. The next year, they had two sessions in my area of Winston-Salem & Greensboro, NC. My neurologist spoke at this meeting. I would like to get a support group started in the area, but right now they have in it with movement disorders, mainly Parkinson Disease. There was a large group of both of the sessions locally, so I know we could get a group going. I am willing to help, but right now the person at the hospital left and we are waiting on a replacement. There has been so much information that IETF has provided. I did a case study as an RN at my previous job before I retired. Thanks, IETF for your good work. My main problem is I can't take some of the meds and there are good references on the web site.
I am a ET sufferer and have to say the IETF are the biggest and best non profit organisation i know of for ET and help a lot of people around the world with this condition and make them feel better about themselves. keep supporting the IETF so they can support people like me and spread awareness of Essential Tremors so that it becomes less socially awkward. Keep up the great work IETF