Essential tremor (ET) is the most common movement disorder. Despite the fact that millions of people in America have ET, it is ironic that it creates feeling alone, isolated, and different from other people. Knowing that “you are not alone” is small comfort when the majority of people without ET simply misinterpret and don’t understand.
The feeling of being isolated makes it that much more important to know where to turn for understanding and affirmed. In addition, the organizations and facilities that are established to raise awareness and provide emotional support and recognition often provide valuable resources:
- Locate support groups in your area
- Provide practical advice on “hacks” to make life easier with ET
- Referrals to specialists
- Links to sources for assistive devices, etc.
4 resources everyone with ET can use
If you haven’t already started looking for organization, here are 4 resources to get you started:
- International Essential Tremor Foundation (IETF): Founded in 1988, the IETF’s tag line sums up its mission as “Your voice for essential tremor.” The user-friendly home page includes buttons that take you other pages on their site such as ET Awareness, Treatment Options, Find a Support Group, Coping with Essential Tremor and much more.
- Tremor Action Network (TAN): In addition to the “About Tremor,” “Resources” and “News” tabs at the top of their home page, within their site you can find audios and videos, news about clinical studies and research, and TAN can even provide information on disability resources.
- Focused Ultrasound Foundation: Although this site is not specific for ET, Focused Ultrasound is the groundbreaking noninvasive treatment to control tremors without surgery, radiation or medication. At their page on Neurological Conditions including ET, the website notes that “The Foundations considers the brain to be the vanguard target for focused ultrasound.” Learn more there about how this treatment applies to ET.
- Sperling Neurosurgery hosts a dedicated, private Facebook group for ET Awareness & Support: As of this writing, there are over 350 members who are open about their issues and feelings and generous with their caring, empathy, support and tips for fellow participants. All are welcome, and it’s simple to join by adding your name and email address.
Don’t wait to get the support you need
If you’re feeling depressed, discouraged, frustrated, angry, embarrassed, ashamed, isolated, helpless or any of the emotions that life with ET can generate, Sperling Neurosurgery Associates encourages you to explore these or other resources out there. In case using the internet is not your preferred research tool, contact (or have a loved one) contact your physician’s office for a referral to a medical social worker who’s usually an expert on advocacy and networking on behalf of patients. Most hospitals have one or more social workers on staff, so the hospital where your doctor has privileges may also be able to assist you.
Connecting with others who have ET can relieve isolation and gives reason to hope. Don’t wait to get support that can help improve quality of life with ET.
If you are interested in finding out more about Focused Ultrasound for ET, visit our website, where you can watch videos of actual patients who have been through the treatment.