COVID 19 PANDEMIC STRESS IMPACTS BRAINS OF CHILDREN AND ADULTS WITH ESSENTIAL TREMOR (ET)

www.TheHopeNet.org

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 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.  

Contact:

PETER MULLER at hopenet12@gmail.com

www.TheHopeNet.org

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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.

Contact:

PETER MULLER at hopenet12@gmail.com

www.TheHopeNet.org

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ESSENTIAL STRESS MANAGEMENT TIPS DURING COVID-19 PANDEMIC

  1. 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!
  2. 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!
  3. Thanks for the Memories – Create amazing photo albums freeing up awesome images trapped on your phone and Facebook!
  4. 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.
  5. 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!! 🙂
  6. 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!
  7. 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!
  8. 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!!
  9. 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.
  10. 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.

Contact:

PETER MULLER at hopenet12@gmail.com

www.TheHopeNet.org

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New therapy enters Phase II testing

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:

Is there any correlation between Essential Tremor & population density?

*We know stress increases ET symptoms

* Experiments with lab rats/mice show greater aggression and stress indicators in high density populations. 
* Observation of human populations show similar traits. 
* Repeated stress can enhance long-term ET. 
– Is there a greater incident of ET, per 100,000 of population, in urban environments vs rural?
– Is there a means to measure this?
– Since survival mechanisms can be genetically passed on, is it possible that repeated stress triggering ET will increase probability of future generations with ET?
– Again:  Is ET an offset survival coping mechanism (reaction time / intuitive capability / shutdown – not reacting) to deal with repeated high stress situations that don’t allow immediate physical responses?

Hi ET Community,

December 1 will be a watershed event for HopeNET & Essential Tremor. In addition to the play, Swimming with Kate, which is our fist step in increasing awareness of ET especially among doctors, there will be a distinguished panel of doctors – Drs. Haubenberger & Fishman. In August 2016, Focused Ultrasound was performed on me. Dr. Fishman was the neurologist. Dr. Haubenberger has subsequently studied the result. He & his team then created a poster. They displayed the poster at the annual Movement Disorder Society in June in Hong Kong (find it attached). As you can see, it has my MRI’s taken prior & post the procedure. This is your opportunity to ask questions about this treatment as well as others for ET.

Don’t miss this!

— Peter

MDS_Poster_V1.5

 

Essential Tremor Conference GoFundMe Campaign

It is important that HopeNET continue to play its advocacy role not only with the public but also with the medical community. HopeNET needs money to fund its role in the conference. We are asking for $4500.

Essential Tremor (ET) is the most common tremor in the world. It affects 7 million Americans. Yet very few people know what it is. It is commonly confused with Parkinson’s – another movement disorder. The lack of awareness has a direct impact on the amount of money being spent on research for the condition. In fact, not one medication has been developed to date to treat Essential Tremor.

HopeNET played an instrumental role in getting NIH to host a conference on Essential Tremor. It will be held May 11-12 at the NIH campus. It will bring together the key researchers on ET from across the country as well as some international experts. I expect positive developments resulting from the conference. In conversations I have had with members of HopeNET’s medical advisory board, they too share my optimism.

Peter Muller, Executive Director