Living with Essential Tremor: Three Important Pieces of Advice
March is Essential Tremor Awareness month and I’d like to share my journey with essential tremor, which is unique, just like every person living with this condition. My tremors developed and progressed over a number of years. Gradually, everyday tasks, such as using the trackpad on my laptop, became harder to do. Logging onto my computer and clicking on boxes on the screen was very difficult and drove not just me but my husband crazy! I also experienced what I called a tsunami in my cup from the beverage splashing out of the cup or having food fall off the fork, onto my plate in the middle of a restaurant. My son, noticing my tremors were getting worse, encouraged me to speak to my doctor about treating my tremors.
With my son’s encouragement, I spoke to my doctor about treatment options for essential tremor. In general, I tend to react poorly to medication – and brain stimulation or surgery were not options with which I was comfortable. Following my doctor’s appointment, I did research and found a local support group, where I was able to connect with others living with essential tremor and to learn about their experiences and management methods, which I found extremely helpful.
Through my involvement in the San Ramon Essential Tremor Support Group, I was introduced to many people who were living with essential tremor, as well as interesting speakers who came to talk to the group about treatment options and advances in the essential tremor arena. One of the guest presentations was from Cala Trio; two individuals came to our group to speak about a new medical device and wanted to know if anybody would like to participate in a study. They said that Cala Trio™ was a non-invasive, wrist-worn, targeted therapy device. It works by providing gentle stimulation to the nerves in the wrist. That stimulation interferes with the area of the brain where the tremors originate. This instantly piqued my interest, and I volunteered right away. It has been a few years since that initial meeting, and I’m thrilled to say that Cala Trio has greatly improved my life.
For those impacted by essential tremor, here are three pieces of advice:
- Find a support group: It can be easy to feel isolated and frustrated with yourself quickly, but a support group is an excellent way to meet with others sharing the same struggles as you and will connect you with numerous resources to aid in your everyday life. You may even learn some helpful techniques from your fellow members, like the importance of lids and straws for drinks, asking a waiter to have your meal pre-cut in the kitchen, and even the new technology offered on your smartphone to assist with dialing a phone number or writing a text message. Through my local support group, I have found additional materials that have been helpful such as the International Essential Tremor Foundation’s
- Be an advocate for yourself and talk to your doctor about what kind of treatment plan works best for you: I have always been a huge advocate for myself and encourage you all to do the same. What saddens me the most is how many people don’t realize what essential tremor is, including physicians. I did my own research and participated in a trial with Cala Trio. After my participation in the study, I took all my information on Cala Trio to my primary care physician to discuss getting a prescription for the device, as I found this treatment option worked the best for me. I can honestly say the results I have seen with Cala Trio have been remarkable.
- Listen to your body: Pay attention to what factors might be making your tremors worse, such as caffeine consumption or fatigue, as both exacerbate tremors. Get plenty of rest, and don’t push yourself too hard. Essential tremor can be triggered by stress, so in addition to plentiful amounts of rest, take time to check in with yourself mentally, and make time for activities that relax you. Go for daily walks with a loved one, work on a passion project, do whatever you need to do to ensure your stress levels are at a minimum every day.
Living with essential tremor is challenging, but there are numerous ways to improve your quality of life without surgical treatment. This Essential Tremor Awareness Month, I encourage you to bolster your support system, talk to your physician about treatment plans that work for you, and listen to what your body needs; you just might find these steps will make all the difference.
By: Holly Love
Photo Credit: Courtesy of Cala Health