Interesting starter on the role of Cannabis in the treatment of Essential Tremor.
Yesterday’s (1/6) Support Group Zoom call was very informative. Dr. Striley is conducting a survey of University of Florida students. It is the first such study ever involving ET and college students and HopeNET is helping to fund it. The preliminary findings are that this is a group that has been ignored for way too long.
Cala Trio is an effective, easy-to-use, prescription therapy that reduces hand tremor. See if the therapy is right for you and utilize your Flexible Spending Account* (FSA) or Health Savings Account** (HSA) funds.
The end of the year is quickly approaching! If you have a FSA account, your healthcare flex spending dollars may expire at year end. Check with your individual plan for detailed information.
Get your prescription today! Download the Doctor Discussion Guide and talk to your doctor in person or by telehealth about Cala Trio.
Have you heard of the Cala Trio? If not, there’s lots to learn. Cala Trio is different than E-stim or TENS. Cala Trio is designed to deliver just enough bioelectric stimulation to reach the median and radial nerves under the wrist to penetrate and stimulate those nerves and interrupt the tremor cycle. This not like using a TENS unit where the goal may be to turn up the TENS stimulation as high as the patient can comfortably tolerate to relieve muscle pain. TENS has a local effect and pain immediately returns after therapy stops. Cala Trio provides stimulation calibrated to the patient’s individual tremor and provides meaningful tremor reduction on average for 96 minutes after therapy ends.
Their product link, www.calatrio.com has several patient testimonials and additional product information.
Doctor Discussion Guide.pdf This is a very helpful PDF that can be printed to use during conversations with your physician about Cala Trio.
Finally, The Cala Trio Customer Success phone number is 888-699-1009. Customer success specialists are available to answer any questions regarding this novel therapy Monday through Friday, 10AM to 7PM Eastern / 9AM to 6PM Central/ 8AM to 5PM Mountain / 7AM to 4PM Pacific. Their Success Team is dedicated to providing quality support as patients learn how to manage their hand tremor using Cala Trio.
If you have been formally diagnosed with essential tremor for at least three years, you may be eligible to participate in the KINETIC Trial.
The KINETIC Trial is looking for adults ages 18 to 80 years old who have been formally diagnosed with essential tremor for at least three years. The purpose of this study is to evaluate the safety and effectiveness of an investigational drug compared to placebo in reducing tremors. Participation in the KINETIC Trial lasts approximately 71 days, including seven clinic visits and five phone calls from your study team. Eligible participants may receive reasonable compensation for their time and travel.
To learn more about study participation and to see if you may be eligible, visit KineticTrial.com and talk to your doctor today.
Summary: Frequent exercise, such as walking, swimming, and dancing, was associated with less brain shrinkage in older adults. The effect of exercise in older people was equal to four fewer years of brain aging.
COVID 19 PANDEMIC STRESS IMPACTS BRAINS OF CHILDREN AND ADULTS WITH ESSENTIAL TREMOR (ET), THE MOST COMMON MOVEMENT DISORDER WORLDWIDE
How to Recognize Signs and Reduce Stress During COVID-19 Pandemic
March 23, 2020 – Centreville, VA – Adults and children diagnosed with Essential Tremor (ET), a constellation of closely related neurological syndromes in which motion control is often difficult, may be noticing more difficulty managing their symptoms since the onset of the 24/7 COVID-19 Pandemic news coverage.
“ET patients are often not aware they are experiencing chronic stress or that ongoing, prolonged exposure to stressful situations such as the COVID-19 Pandemic can subtly worsen current levels of movement control, increase tremor, making usual levels of medication less effective,” says Peter Muller, Executive Director of the patient education and advocacy association, www.TheHopeNet.org.
ET affects nearly 10 million Americans, roughly eight times more than Parkinson’s Disease, a motion disorder most people think of when they see ET patients shake. ET is a complex hereditary condition that causes tremor in the hands and frequently in the head and voice. People with ET shake uncontrollably during most activities of daily living, and this is a source of stress, anxiety and depression. External sources of stress, like COVID-19 make matters worse.
One type of environmental trigger for increased tremor is stress. Stress has a negative effect on every person but for people with ET, the release of stress chemicals in the brain can worsen symptoms of motor control resulting in tremor.
On a good day, people with ET shake under normal circumstances doing daily tasks with varying degrees of movement control. However, given any momentary jolt of stress or chronic stress exposure, the shaking can become more exaggerated. Some people find tremors are so severe they are debilitating,
“The brain doesn’t know the difference between stress and taking an appropriate action in response to stress, such as bravery. ETers may find their medications are not as effective and not understand it’s related to prolonged exposure and response to the COVID-19 pandemic,” adds Muller.
Dr. Claudia Testa, a movement disorders neurologist, emphasizes there are many positive steps people with ET can take. “People with ET can use non-medication interventions to decrease stress-induced brain reactions. These include deep breathing techniques, mindfulness, exercise, taking short breaks from activities impacted by tremor to dial down frustration, and taking in important COVID-19 pandemic news in small chunks from trusted sources such as the CDC – that’s the place the White House website links to. Reach out to your support networks to avoid feeling isolated. Talk to your doctor if you think you may need more medication to help with tremor control, or supportive treatment for managing stress.”
Muller encourages ET families to:
- Limit total time exposed to COVID-19 Pandemic news to one hour per day broken up in increments of one’s own choice. Use the American Medical Association guidelines. https://www.ama-assn.org/delivering-care/public-health/covid-19-frequently-asked-questions. Follow local websites for pertinent information in your area.
- Limit contact with people who are overly stressed, panicked or obsessed by COVID-19 Pandemic news. ET patients will suffer consequences of participating in debates or fear-based discussions. “There is nothing we can do about another person’s fear except get sucked into it and that’s not healthy for us.”
- Avoid hateful, mocking social media sites as these are not productive and they are stress producing particularly when you engage any dialogue pro or con!
- Take a walk, stretch, do some yoga, make a list of what you are grateful for, sing, smile. These are great ways to reduce stress, anxiety and depression.
- Connect via phone, FaceTime, Skype or similar with friends, family, ET support group members, and colleagues to reduce isolation.
- Make routines and schedules to provide structure when normal daily routines get disrupted by pandemic restrictions.
“These are difficult times but let’s not let COVID Pandemic get the best of us emotionally,” says Muller. “Our leaders will not be perfect. So let’s not demand that. Everyone at every level is doing their best. Let’s do our best, too. Together we are all strong. COVID-19 is new for everyone. The important message for people with ET is to look and respond to facts not emotions. Remain resourceful and positive. And if you need help with Essential Tremor, come to https://www.TheHopeNet.org.
PETER MULLER at firstname.lastname@example.org
STRESS WARNING SIGNS PEOPLE WITH ESSENTIAL TREMOR SHOULD KNOW
- Name calling at TV, disgust with officials managing COVID 19 Pandemic, posting angry diatribes on social media — Redirect your outrage for positive action. Someone needs your help somewhere. Anger won’t change anything.
- Trouble sleeping — Up all hours worried about what you didn’t get at the grocery store? It’s okay. Barter with a neighbor. Hem a skirt or trade canned goods or cash if they’ll pick up a dozen eggs or whatever you missed on their next run to the store.
- Moody or short tempered — Routines are more than disrupted and uncertainty is the new norm. So embrace it. Learn to laugh at yourself and not take things personally when others snap, crackle and pop at the slightest inference.
Call your neurologist and/or primary physician to discuss how you are managing stress.
PETER MULLER at email@example.com
ESSENTIAL STRESS MANAGEMENT TIPS DURING COVID-19 PANDEMIC
- Go on a TV Pandemic News Diet – Stay informed, but not 24/7. Allot one reliable news source that supplies facts without the drama. Set a timer for 60 minutes total engagement per day. Watch at least one funny movie daily instead!
- Clean and purge! – Tackle overflowing closets. Prepare donations for future pick up. Love that shirt or outfit? Keep it. If not, lose it. You’ll feel so good (anti-stress chemicals) knowing you’ve helped other and all that extra closet space!
- Thanks for the Memories – Create amazing photo albums freeing up awesome images trapped on your phone and Facebook!
- Handmade with Love – Rekindle a hobby using supplies on hand (no pun intended) especially if it is one you abandoned because of tremor. YES! The eye-hand coordination you will regain will surprise you. Rediscover determination. It produces awesome brain chemicals. Say, “I think I can” repeatedly until you succeed.
- Bloom where you are planted – Weed the garden! Great exercise, eye-hand coordination! Stretch first. Do a little at a time, please! This is no time to strain or rupture anything!! 🙂
- Bake bread from scratch! Never done it before? Make it an adventure! It’s great stimulation for your brain — from the tips of your fingers to the synapses in your cerebellum — Try your hand at sourdough!
- Control motion! Squeeze some clay, putty or a stress ball in your hands for a good five minutes a day. This really does relieve stress from your arms and shoulders! Put some energy into it and you’ll be surprised at how relaxed you are after!
- Play marbles – Ten marbles on the floor. Grab one at a time and place in a nearby plastic (more quiet than a glass) bowl using only your toes. No marbles? Try grabbing a wash cloth with your toes and placing it in the bowl instead. Do it ten times each foot. Amuse yourself and draw a monkey face on the cloth. Do whatever makes it fun. Trust me, your brain is getting as much of a workout as your toes!!
- Listen to calming music or dance to MoTown, Burlesque The Musical, hey, anything to get you up dancing! Try something from the 50’s. Or sing along with any of the Beatles or…anything that makes you happy.
- Take a hot bath – Throw in a few lemon slices, sprigs of lavender from your (or a neighbor’s) garden and glow in the aftermath. Curl up with a good read afterward. TV and social media OFF time. Ahhh.
PETER MULLER at firstname.lastname@example.org
Sage Therapeutics is about to begin Phase II testing of Sage-324 for Essential Tremor. There is a lot to learn about the way Sage is thinking about Neurological Disorders on their corporate website at: