New Clinical Trial

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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.

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

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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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Considering Surgical treatment?

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My essential tremor was getting worse. I had tried, over the years, a number of the currently available medications for ET  – without any effect. As has been detailed on this site, I consequently had surgical treatment for my ET. I therefore understand the frustration many feel leading to them deciding on surgical treatment for their tremor. I am convinced that surgical treatments are effective. However we are talking about the brain. As I well know, it is incredibly complex & every bodies’ brain is unique. Therefore it is incumbent on everyone considering it, to do due diligence & learn as much as they can prior to having it done. 


To provide some initial assistance. Dr. Rodger Elbe has provided the following. I welcome any further information that you feel is appropriate to help someone considering surgical treatment for their ET

Peter

New therapy enters Phase II testing

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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?

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*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?

Essential Tremor and Alcohol Addiction

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ESSENTIAL TREMOR AND ALCOHOL ADDICTION
Movement disorder specialists (and all doctors, for that matter) need to be educated about addiction, and focus on treating patients as a whole person, and not just the symptoms presented.

My spouse has essential tremor and realized, many years ago, that alcohol calms the tremors. Now, after years of self-medicating with alcohol to treat the tremors, and also to calm anxiety, we’re dealing with alcohol dependency, and the doctors are either dismissive of it, or simply don’t know how to deal with it.

I’m aware that many patients with essential tremor use alcohol to treat symptoms. In fact, many doctors even recommend alcohol as an occasional treatment. But, at what point does the medical community become concerned about alcohol abuse and addiction, and actually learn how to deal with it?

When told how much alcohol my spouse drinks in a day, various medical providers have offered no concern or warnings about the dangers of high alcohol use. They have not asked questions to determine if that amount is actually required to control the tremors, or if the alcohol is being used for other reasons.

In my spouse’s case, alcohol is also being used to calm daily and situational anxiety. But, the neurologist dismissed the anxiety as being caused only by the tremors. I realize that essential tremor causes severe social anxiety and embarrassment. But many other life events create anxiety, as well, and the doctors have suggested no other solution or treatment. In fact, when asked if counseling is recommended for the anxiety, we were told “No, not really”.

I believe it is common knowledge that psychotherapy is the standard treatment for both alcoholism and anxiety. Why wouldn’t a neurologist recommend counseling when a patient has other known conditions, in addition to essential tremors, especially when those conditions, like anxiety, are making the tremors worse?!

Overall, I’m severely disappointed that medical providers seem to have blinders on. They are focused only on trying to make a symptom disappear instead of looking at the overall condition of the patient. Most, if not all, essential tremor patients have daily anxiety. Physicians need to focus on treating the anxiety as well as the tremors.

Thousands of essential tremor patients treat their symptoms with alcohol and many of those become alcoholics. But the physicians are overlooking that fact, and have no clue how to address the alcohol dependency. Addiction to any chemical substance is a dangerous and deadly disease. For any medical provider to be dismissive of a patient chemically dependent on a substance is a serious ethical issue. 

The good physician treats the disease; the great physician treats the patient who has the disease.              —Sir William Osler

Update:
Doctors are not treating the patient as a whole person – What happened to “bedside manner”?

So, our most recent appointment with the neurologist was severely disappointing. The topic of alcohol dependency was the primary topic, which is good because it needs attention. However, the doctor was severely callous and insensitive in addressing this topic. We felt insulted by the severe lack of compassion used to address this issue.

No one who is dependent on alcohol is proud of it. Essential tremor is a physical condition with a wide variety of emotional consequences. Not only are the tremors embarrassing, but when a person also becomes dependent on alcohol, and also can’t find a tremor medication that works to replace the alcohol, they can feel like they’re in a helpless position.

When a physician is asked to help with this situation, and responds with flippant, insensitive remarks, as if he’s talking to a drug addict, it is extremely discouraging and embarrassing for the patient, and very unprofessional for the medical provider.

Patients need to be treated as a whole person, which means each person has feelings and deserves compassion and respect, no matter what medical or emotional conditions they are dealing with.

Written for HopeNET by an author whose name is withheld for privacy.

ET, Balance, and Falls

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Seven people with ET that I have known have died from falls. While the cause was not exclusively ET, it was a factor in all cases.  Personally, my balance and gait have gotten worse. It is a combination of my ET’s progression and the consequence of the surgical treatment of my ET.

I was proud of myself because I had adjusted my balance to prevent falls. I was using my hands constantly while I walked or rose. I thought it was working, but it wasn’t. I had a very serious fall going up the stairs in which I seriously bruised my kidney. I was doing just about everything wrong!

Realizing that, I did something. First, I joined a water aerobics class. Many years ago, Jan Helper in the Columbia ET support group had told the group how well water aerobics had helped her. Finally, I started and immediately saw the advantage of doing it – the buoyancy.

Second, I started doing neurological physical therapy – with the emphasis on neurological. The practice I go to only handles people with neurological disorders. My young physical therapist fully understands movement disorders and their effects on the body. While she is nice, she is tough – constantly pushing. I had Marine Drill Instructors in the Navy; she is nicer but pushes just as hard as they did.

When I started, I walked like an Emperor penguin. I leaned forward – my shoulders were tense. My arms were out to the side, particularly my right one which was tense. I used my hands for everything. I took short steps. I needed to use my core to walk properly. I needed to relax, specifically my shoulders and arms. I had to quit using my hands and learn to rely on my legs.

It is not easy to learn how to walk again. It takes a lot of repetition and strengthening of the legs. Of real importance is to relax, relax, relax.

When my therapist learned I did the water aerobics from 9-10am twice a week, she scheduled me from 11:30-1pm on the same days. It takes me the intervening time to change and drive. An important part of the therapy is that I must be tired. At the end, particularly on Thursday, I am!

 It is a long-lasting effort. I must remain committed and persistent.

As I have said repeatedly, everyone’s ET is unique. This may or may not be right for you. However, alternative treatments for ET do work!

— Peter Muller

Essential Tremor Observations, by Bruce

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Impact of Severe Influenza on Essential Tremor

Leading up to and during a very severe influenza illness, I noticed that my tremor was triggered more often and with greater intensity.  While I have been fortunate that my tremor has not been as severe as many others, this was not the case during my illness.  Simple tasks, such as eating, holding a cup, and writing were even more difficult.  Also, before the flu symptoms appeared, tremor triggers became more noticeable but without an apparent cause.  Tremors continued to increase as the illness progressed.  For two days my sense of balance would occasionally be disrupted, though this could have been due an unnoticed inner ear issue.

In the two months since the flu, my tremor has decreased but not to their previous levels.

This raises questions:

  • Did the flu virus itself have a direct physiological impact on tremor triggers?
  • Or did it simply raise the stress factors in the body that can trigger the tremor?
  • Regarding recovery, can major life events that create excessive stresses have a cumulative effect on a person’s tremor over time?

Pets and Their Tremor

Some cats we have owned over the years (generally, those with small statures) have shown a body tremor when full stretching while standing.  Age was not a factor. However, this has also appeared lately in our son’s elderly dog when he stretches.

Question: 

  • Is this a pattern and a clue to a possible mechanism that is inherent and a necessity for survival (reaction time signals), yet can become dysfunctional through age or excessive stress?