The International Essential Tremor Foundation (IETF) has a slogan: Essential tremor makes simple hard. This is so true. Not only does this progressive movement disorder gradually interfere with the daily tasks of life, but it also creates embarrassment, frustration, isolation and discouragement for those whose tremors are painfully obvious. This emotional exposure happens because ET is poorly understood. For example, how much do your friends, acquaintances and co-workers know about ET? Ironically, most people know someone who has “the shakes”—yet they don’t even know what a movement disorder is.
The IETF has worked hard to establish March as Essential Tremor Awareness Month. The Foundation wants (and needs) as many people as possible to help promote their message and raise money for research.
To help people get involved, the IETF has assembled a free Do It Yourself Toolkit. You might think it takes an ambitious go-getter to organize awareness or fundraising events, but the DIY Toolkit makes it easy for anyone to take a first step and start small.
The DIY Toolkit offers tips and advice that cover organizing an event, recruiting help, finding sponsors, getting the word out, making it memorable, etc. If the idea of creating a fundraiser sounds too challenging, think about hosting an informal educational get-together using a few posters and brochures. Serve light refreshments and make it a social event. Have fun with it. The more people know, the more we can dispel the embarrassing moments.
Lessons from grassroots movements
In my grandparents’ day, many medical problems were considered very hush-hush. It was common for kids to hear grownups whisper about “female problems” or “the Big C” rather than gain honest information about diseases like uterine cancer or metastatic lung cancer. Thankfully, mass media (movies, books, TV talk shows, the internet, etc.) brought many diseases out of the shadows and into the open.
In addition, the power of grassroots movements generated a groundswell of open communication and better information. A classic example is the pink ribbon that rapidly became associated with finding a cure for breast cancer, which gave rise to major foundations. What began with a small seed flowered into a national model for other disease conditions. Grassroots organizers developed key strategies from which we can all learn:
- Personal experience touches hearts and engages interest even more than posters and did-you-know factual handouts
- Identify your most enthusiastic audience members and recruit them as helper volunteers
- Use social media (Facebook, Twitter, YouTube, patient forums) to spread the word
The IETF uses tools like these, as well as others, to get the word out about ET, but they can’t do it alone. The Sperling Neurosurgery Group encourages ET patients and their family/friends to explore ways to raise consciousness about this condition. Knowledge is power, and in general, the more people know and understand about movement disorders, the more compassionate and willing to help they become.
A compelling ET story
At our own Center, where we offer the Neuravive MRI-guided Focused Ultrasound (MRgFUS) to control hand tremors, we share in the compelling experiences of patients who felt their lives were forever compromised by tremor-related disabilities – and who were then restored to high quality of life through our treatment.
We invite you to hear some of their stories through video testimonials on our website.