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.
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!!