Contact the IETF

To reach the IETF, call toll-free 888.387.3667.
Fax 913.341.1296
Mailing Address:
IETF
PO Box 14005
Lenexa, KS 66285-4005
Physical Address:
11111 West 95th Street
Suite 260
Overland Park, KS 66214

20 thoughts on “Contact the IETF

  1. Good afternoon,
    My mother has been diagnosed and dealing with essential tremor for almost 25 years (she is now 80). In addition, she suffers from anxiety issues and has been working with a psychiatrist (and psychopharmacologist) to find an anti-anxiety medication that does not exacerbate her tremor, unfortunately we have had no luck. Would you be able to share either medications we can research or a doctor in the Boynton Beach FL area that specializes in working with ET patients?
    Thank you

    • I have had the same problem. After trying a number of medications, I found that Cymbalta works well for me. It can be prescribed by brand name or generic name.

  2. I have essential tremor and went thru very successful DBS at the Mayo Clinic in Rochester, MN in 2011. Dr. Kendall Lee was the neurosurgeon that performed the operation. I live in Savannah, GA where I am a member of the ET Support Group at Chandler Hospital. Each month the group meets and we try to get a member to facilitate the meeting. I volunteered for the June 1st meeting. The reason for this email is to find out if the IETF could send me from your library any videos/CDs on ET or the IETF that I could use in the meeting. I would return the videos/CDs soon after the meeting. Thanking you in advance.

    • Not to our knowledge. A good resource for looking at current clinical trials is the website, clinicaltrials.gov.

  3. I am currently 73 and have had ET since college. It was a relatively mild inconvenience until the past 20 years, but has grown steadily worse. Now I have issues with writing, eating & drinking, and a vast myriad of other activities. I am scheduled for DBS surgery in the spring and hoping for a big improvement. In the meanwhile, I want to share some of the dozens of accommodations that keep life palatable for me.
    First and foremost, this is a BENIGN condition! It doesn’t hurt or kill unless you choose to let it! Learn to laugh at yourself. Don’t take offense. If someone seems interested, explain. Be thankful you aren’t dealing with something worse.
    Now, one of my favorite activities is cooking. Can get messy. So, I do my measurement and assembly in the sink, and I drape kitchen towels around work areas. Cleanup is a snap.
    Instead of using a spatula to flip, I cook in lightweight nonstick pans and learned to flip with the pan. (Practice with a slice of dry bread first – it really is fun, and works.) To stir, set pan or bowl in the sink and use a whisk instead of a spoon.
    I usually use footed bowls with pour spouts for sauces, soups, pancakes, etc.
    Some things I just can’t do, so I plan to ask for help. For example, when making jellies and jams, my husband does the final pour into jars and puts on lids.
    This is my first contribution. Let me know if you want more ideas. I am a retired teacher, and taught in spite of my ET getting worse the last 10 years of my career. In fact, it became a teaching tool.

  4. Has anyone had success with physical therapy for improving their tremor, such as the “Big and Loud” PT program which has had success with Parkinson’s disease?

  5. Hello, my name is khadiga, I am 30 years old and i am from Egypt.

    I have a problem where my hand starts shaking and i cant control it then it attacks my voice box and my head then my entire body and i cant control any of it. it never occurred regularly but suddenly this year my hand shakes more than the usual. i have done MRI scan and EEG scan and it showed nothing, two neurologists said i have nothing and i just need to relax and not to be anxious, and dont take im serious. One Neurologist gave me vitamin b12 and wanted to give me anti depressants but i refused to take them but i took the b12, i felt calm for a few but then my lower back started aching and i got my tremors back. Another neurologist thought i was faking, he gave me an anti depressant that is herbal called safamood that contains: Hypericum perforatum 250 mg + Vitamin C 50 mg. It made me drowsy however i still got mild hand shakes.

    My tremors happens any time, whether Im under stress or not. my right hand shakes, sometimes it stops and sometimes it just happens out of the blue. i feel like the tremors give me more stress since i dont want anyone to panic or worry and i feel depressed because i cannot control myself, i feel weak.

    I researched my symptoms and came across you. you have gave me so much insight, this kind of information doesnt exist in my country and i wanted to thank you for guiding me. I wish there was any more guidance here that can help me how to relief it. I am a graphic design and i rely on my right hand, it’s getting harder and there’s no one here that can understand me and i can talk to.

    • We are glad you found us, Khadiga. You are not alone in your feelings and experiences. Many people talk about how stress worsens their tremor and they get depressed and feel weak. We recommend that people see a movement disorder specialist to get a proper diagnosis. These are neurologists who have special training in movement disorders. You didn’t say where you live in Egypt, but I Googled movement disorder specialists in Egypt and this physician popped up: https://www.researchgate.net/profile/Ali_Shalash2. Many, many people with essential tremor continue their work and I believe it is possible for you. It may be at a different level, but it can work. We have some inspirational stories on our website about people who have persevered despite their tremor. Please take a look at some of them. https://www.essentialtremor.org/coping/personal-storiessharing/. Lastly, meditation works wonders for relieving stress. There are several phone apps that provide quick breaks from the stress of the day with soothing sounds and visuals. One is called “Calm” and another is called “Anxiety Free.” Look for them if you have a mobile device. Sometimes just taking a few deep breaths and being in the moment (listening to your heart beat) can be soothing.

  6. Dear Sir/Madam,

    My name is Jacob Green. I have been following the activities of your organization for some time now. I spent sometime researching the concept and purpose driving the organization, and I found myself deeply connected to your cause and have decided that I would like to make a monetary donation.

    • Jacob,
      We are glad you found us and feel connected. We try to provide something for everyone through our website and social media to help people manage living with essential tremor. Are you impacted by essential tremor?

      We are deeply appreciative of each and every donation. You can make a donation directly online at https://www.essentialtremor.org/donate/ or call our toll free number and do it by phone, 888-387-3667.

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