Living with Essential Tremor
by Elizabeth Linden
I was at my nephew’s wedding about a month ago. I had a great time and it was so nice to connect with family members and meet new people. As I was able to just relax and enjoy the event, others were often worried about things running smoothly. The bride was anxious about the look of her makeup and the groom’s mother trembled a bit while giving her speech. My niece, Lisa, appeared to be very nervous as well. Lisa was not part of the wedding party, though, so her trembling hands and shaky voice appeared to be out of place.
Since she appeared to be so scared or nervous, many concerned people were asking if she was if something was wrong. Many assumed she was had she was extremely anxious about something and they were genuinely worried about her. Lisa feared that the others who didn’t ask may have assumed she was on mind-altering drugs. That evening was just one of the countless social events where Lisa is questioned about her presumed anxiety or given odd looks by strangers. While Lisa did feel a little anxious that night, she mostly felt embarrassed. Lisa didn’t have any pressing worries and she doesn’t have an anxiety disorder. One of the biggest challenges Lisa had that night (and has every night) is that she is a person living with Essential Tremor (ET).
What is Essential Tremor?
Essential Tremor (ET) is also known as familial tremor. Essential Tremor is an action tremor in otherwise normal individuals. It is more prominent at the end of movements as the person afflicted attempts more precise movements such as drinking out of a glass. Essential Tremor is characterized by involuntary rhythmic contractions and relaxations in one or more body groups with an unknown cause. It is typically symmetrical and affects the arms, hands, and fingers. It can also affect other body parts like the vocal cords, head, and legs. It is sometimes mistaken for Parkinson’s disease since both diseases cause tremors. Essential tremor is different from Parkinson’s in that it is an action tremor, whereas Parkinson’s is a resting tremor. Essential tremor intensifies when one tries to use the affected body part. Essential tremor is a progressive neurological disorder and it is the most common movement disorder. It is seen in 1% of the total population with the majority of patients being over 40. Since it is very rarely seen in individuals under 40, people like Lisa may struggle more with low self-esteem since there is not a large peer group with the disorder that one can turn to for support.
How is Essential Tremor Diagnosed
Essential Tremor is a neurological disease that often runs in families. It is diagnosed by a neurologist through symptoms. Lisa’s first symptoms appeared when she was 16 years old. She remembers being at a restaurant with her mother and having a tremendously difficult time holding a sandwich together. Her mother noticed Lisa’s hands shaking and it looked familiar. Fortunately for Lisa, the diagnosis came early because her family was quick to recognize the symptoms.
Medications and Treatment
1. While eliminating caffeine from your diet will probably not stop tremors completely, caffeine can increase tremors, so it is recommended that those with ET quit drinking caffeinated beverages.
2. The most common medications for ET are beta-blockers like propranolol and/or anti-seizure drugs like primidone.
3. Some have used Botox injections into the tremoring muscles to lessen the severity of tremors.
4. Focused ultrasound can also be used with ET patients. This procedure uses ultra-high frequency sound waves on a single point in the brain that is involved in the production of tremors as it destroys targeted tissues.
5.Some patients resort to having deep brain stimulation although this is not common and is generally used for advanced stages of ET. This surgery is used to implant a device that delivers impulses to a specific part of the brain to interrupt signals that cause tremors. For some, this has improved tremors on both sides of the body.
6.There is no cure for ET.
How does essential tremor affect your life?
Essential Tremor is a progressive disease that affects many aspects of an afflicted person’s life. Because of the uncontrollable tremor, many tasks requiring fine motor skills take much longer or just can’t be completed effectively. Tremors can affect many aspects of life that most people take for granted. While each person is different, Lisa’s ability to communicate is affected both in speech and written language. Her voice can be shaky and her handwriting is, at times, illegible. She has a hard time typing and even dialing a phone. Even given all the physical challenges, Lisa says the most distressing feature of living with ET is learning how to cope with it on an emotional level. Lisa says ET still causes her much embarrassment due to a lack of knowledge and understanding of the disorder. According to a survey published in 2010 of 75 Essential Tremor patients, embarrassment is a common feature of the disorder (Traub, Gerbin, Mullaney, and Louis, 2010).
Is Essential Tremor dangerous?
Essential tremor itself is not dangerous but it can cause problems as the condition worsens. People with ET may eventually have difficulty eating with utensils, getting dressed, drinking from a glass, and writing.
Coping with Essential Tremor
While there is no cure, some lifestyle changes can make life a little easier for some living with ET. The International Essential Tremor Foundation provides a comprehensive list of resources to help people deal with living with the disorder (Coping-Tips-062019.pdf (essentialtremor.org). Also on the website, you can find links to suggested therapies or places to shop for items such as orthotics, eating utensils, cooking supplies, clothing, bedding, computer aids, writing devices, and books Assistive Devices, Therapies & Techniques - Essential Tremor.
Elizabeth Linden is a retired special education teacher with 25 years of experience. She has a bachelor’s degree in Special Education and a master’s degree in Health Psychology. Liz has been an advocate for the educational needs of special education students throughout her career as well as an advocate for her own medical needs as a person with a rare headache disorder. Liz is also a Senior Anchor with The Power of the Patient Project, and her interviews are featured throughout our digital library.
December 2022 page 4