Gender Differences in Tremor

By Jean P. Hubble, MD

The diagnosis is usually quite obvious – rhythmic shaking of the hands. Despite the fact that essential tremor (ET) is common and easily recognized, there are many aspects about the clinical presentation which are poorly understood.

Virtually all individuals with ET have tremor of the hands. The next most frequently affected body areas are the head and voice. Head and voice tremor occurs in about 30 percent of ET patients in most reports. It is possible that age, duration of the tremor disorder, or gender might be predictive of the clinical expression of ET, including affected body region. To test this notion, we conducted a study at the University of Kansas Medical Center Tremor Clinic in 1992-1995. The results of this work were reported in the journal Movement Disorders, 1996, Volume 12, pages 969-972.

Clinical information obtained from 450 ET patients was analyzed. The average age was 67 years while the average duration of tremor was 25 years. There were 232 men and 209 women included in this analysis. Nearly all of the study subjects including men and women had tremor in the hands. However, only 30 percent of the men had tremor affecting the head and voice while 60 percent of the women had tremor of the head and voice. In addition, hand tremor was more severe in men and head and voice tremor was more severe in women. Thus, women were more often affected by tremor of the head and voice and had more severe head and voice tremor compared to men. There is no ready explanation of this finding.

It is possible that the sex chromosome (X<Y) influences the expression of tremor in men compared to women. Alternately, the sex hormones (estrogen, progesterone, and testosterone) may influence the location and severity of tremor in some way.

Another explanation for these findings is that women with tremor may have another neurological symptom called “dystonia.” Dystonia refers to involuntary, sustained muscle contractions, which can cause unusual postures including head turning. It is possible that some of the head tremor in subjects participating in the study was due to dystonia of the neck (torticollis). In contrast to gender, age and duration of tremor did not distinguish those individuals who had tremor affecting the head and voice from those who had hand tremor only.

Unfortunately, there are few effective remedies for head and voice tremor. Sometimes, the conventional tremor medications will help suppress head tremor to some degree. These medicines include propranolol, primidone, and clonazepam. Botulinum toxin injections into the neck muscles may help suppress head tremor. However, botulinum toxin injections can result in transient muscle weakness so that the patient who undergoes injections may have difficulties with head droop or difficulties with swallowing for several days or a few weeks. Botulinum toxin injections may help voice tremor when it is associated with dystonia of the vocal cords (muscle contractions of the vocal cords). Deep brain stimulation of the VIM nucleus of the thalamus has been shown to improve head and voice tremor in some patients.

Part of the limitation in our ability to better treat tremor is due to the fact that the causative brain mechanisms for tremor are not precisely understood. It is possible that a better understanding of the brain chemistry in ET will lead to better treatments.

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This article is taken from “Essential Tremor: What the Experts Say” third edition published in 2014 by the IETF. At the time of its publication, Dr. Jean Hubble was senior medical director, U.S. WorldMeds, New York, NY.

I Do Everything I Can and Try Not to Let My ET Get Me Down

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

By Elissa,

I was diagnosed with essential tremor about 12 years ago, but I probably had signs of it earlier than that. I have head, vocal, hand, body and foot tremor.

My ET is familial. My paternal grandmother’s head shook but I thought it was old age. My father’s hand and head shook but I thought he was a messy eater. Also, when his head shook I thought he was just in deep thought. When I was very young I recall my paternal grandmother’s head shaking and it scared me . . . I didn’t know why her head shook.

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In my late 50s, I was president of my temple’s sisterhood. I remember shaking a lot when I had to speak in front of people. But I think the stress of the presidency brought out my tremors. 

For years I have attended the Essential Tremor Support Group in Pontiac, MI. The support group leader, Tom Pilarski and his wife Sabrina, are WONDERFUL people! My husband, Danny, is a huge support to me as well. He joined me at my first ET Support Group meeting and I met so many great people who had tremor like me. I was given materials to read from the International Essential Tremor Foundation (IETF) so I could find out as much as possible about essential tremor.

At one meeting, Dr. Peter LeWitt spoke. He is in charge of the movement disorder department at Henry Ford Hospital in West Bloomfield (not far from my home). I made an appointment with Dr. LeWitt and he told me about five different medications for essential tremor and explained their side effects. I picked Topamax because one of the side effects was weight loss. BIG MISTAKE! I slept all day! I have also taken Klonopin and primidone. Now I am on propranolol. This medication is the first medication that I feel has actually worked on me. I feel less “shaky” if that’s possible. I’ve been taking the medication for about a year now. I know the tremor has not disappeared but I FEEL a difference.

Three words I would use to describe ET as it relates to my life are: shakiness, debilitating and annoying.

Once when I had a pedicure, my left foot tremored so badly that the whole salon was in shock. You could see the looks on their faces. I was shocked as well. I had no control over my left foot. It was jumping all over the place! No one said a word but the looks on their faces said it all.

One of my side effects of ET is typing the wrong letters on the keyboard. I’m so happy that there is a red underline when I make a mistake so I can correct it. My handwriting is also illegible.

My vocal tremor bothers me more than any of my other tremors. I have Botox injections to help remedy the vocal tremor. Right now it’s fine but it has to be administered three to four times a year. After the infection, my voice is very weak for about three weeks before my “normal” voice kicks in.

My head tremor is something I just have to live with. I don’t see it, so it doesn’t bother me as much.

ET is my life. I live my life the best I can. I try to do everything I can and try not to let ET get me down. I try to support those who I know can use the support. I have connected many people with the IETF and my support group as well. I try to educate people about what ET is and how it is different from Parkinson’s disease.

I’m living with ET and I’m not going to let it get me down.

Oh Lord, Please Take This Tremor from Me!

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others and share your comments and words of encouragement.

By Anna,

I first noticed I had a head tremor when I was approximately 10 years old. I remember people would ask me why I was shaking and I really didn’t know. And at that age, I didn’t seem to care that much as it didn’t happen that often. I actually blamed it on a neighbor pushing me out of a tree when I was around that age. I thought I had jolted something out of position. My dad didn’t have his tremor yet as it only came on for him when he was well into his 60s.

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As I got older and into high school, the tremors seemed much more frequent. But as long as I kept moving (didn’t stay still) they weren’t noticeable. So I began vigorously shaking my leg when I sat still, especially in school. I remember my teacher asking my mom if I did drugs. My mom just said “she’s a bit anxious” which also was true. The hardest part was feeling out of control and not really knowing why.

After I graduated and found out I actually had essential tremor I decided to try some different medications to see if I could calm it a bit. I tried gabapentin, topiramate, propranolol and primidone but none of them were worth the side effects they brought on. I even tried Botox injections in my neck but after all the pain and the money, I felt no relief. I started taking antidepressants in my early 30s which helped me deal with the tremors a bit better than without them.

Into my 40s, I found out about Deep Brain Stimulation (DBS) surgery and from then on I was on a mission. You see, I was starting to become an introvert. I hated going anywhere where I had to sit still. I had three beautiful children and worked full time at a bank and as long as I could move a bit I could camouflage the shaking. Honestly, I think it was way more pronounced in my own thoughts than it actually was outwardly. But that didn’t matter. To me, I was a freak and I couldn’t stand the thought of people looking at me and either wondering what was wrong or feeling sorry for me. It was really hard to concentrate or focus.

“I can’t count the number of times people asked me if I was cold and I would say yes just because I didn’t want to attempt the ET story and have them feel bad for asking.”

Whenever my bank manager called a meeting, which was almost daily, I literally felt sick to my stomach because I WAS IN THE DREADFUL SITUATION OF TRYING TO SIT STILL AGAIN. And it was actually physically painful because the more I tried to sit still, the harder it was. It was like an internal/external battlefield and all I wanted to do was fall asleep and be still.

The dentist was just as bad or worse. And the time I had a small precancerous spot removed from my forehead was absolutely horrifying because the nurse could not hold me still while the doctor cut me. I even stopped going to church, which I only started in my 30s, but was enjoying. I do remember praying, “Oh Lord, please take this tremor from me!”

Well, in 2006 my prayers were answered! I got my double Deep Brain Stimulation (DBS) surgery. It worked! I was over the moon. I had to get my chest opened again in 2011 and 2016 to get new batteries, which as fine. In 2018, I needed new batteries again and I noticed my tremor coming back quite a bit. From 2006 until 2016 whenever I noticed my tremor creeping back, I would just turn up my stimulators and I was pretty much still again. But the downfall in turning them up was that the wires implanted in my brain were so close to my speech center that every time I turned them up it would be a little harder to talk. Unfortunately now, 13 years later, I sound like I have a speech impediment and it is a chore to talk. But don’t get me wrong, I will NEVER regret the surgery and I will take the speech issue over the tremors any day.

Now I’m hoping and praying to get the new focused ultrasound surgery. I am always positively searching for a better quality of life. So my advice to anyone else suffering with ET is: do what feels best for you. The DBS was an absolute godsend for me and gave me 12-13 years and it’s still not bad, but if the new surgery can help my speech and I am eligible, that will be my next quest. I want to live my best life.

ADA Accommodation and DBS Therapy Provide Support for Fred

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

Fred’s Story

Fred was diagnosed with essential tremor (ET) at the age of 62. That was just two years ago, and yet he has had tremors since he was a teenager. His grandfather had ET it and his sister has it. He said they all have always just adapted the best they could.

Unlike many people afflicted with ET, Fred didn’t let it stop him from going out to dinner, even though he couldn’t get a spoon of corn or peas to his mouth without spilling them. He remembers going through the buffet line at his nephew’s wedding and struggling to serve himself because of his trembling hands. Though he admits that his handwriting has never been good, it finally became so illegible that even HE couldn’t read it.

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“Taking communion at church got harder and harder,” he recalled. “And fine detail work, such as holding very small screws, became impossible.”

Fred applied for “reasonable accommodation” at work, where he is a water treatment operator. Under the Americans with Disabilities Act (ADA), employers are required to provide “reasonable accommodations” to qualified employees with disabilities. It gave him a sense of relief to know others were aware of his condition and that they would provide accommodations to support him in his work.

Through the years, Fred said what helped him cope the most with his ET was his faith and becoming comfortable enough to accept his tremor. He also sought support through the IETF’s Essential Tremor Awareness Group on Facebook.

“When you hear what other people with ET are going through, it kind of relieves the frustration you are going through,” he said.

Medication has never provided him much relief, and like many others, Fred saw his ET worsen with age. He got to the point where he knew he had to do something to get relief. So he went online and did some research on surgical options, then visited with his neurologist about Deep Brain Stimulation (DBS) therapy. After learning he was a good candidate, he underwent surgery a year ago. Today he said he has his life back.

DBS therapy involves electrical stimulation to the brain through an electrode planted deep in the VIM (ventralis intermedius) nucleus of the brain called the thalamus. The implanted electrode is connected to a neurostimulator (battery) which provides the appropriate amount of electrical stimulation to control the tremor.

Today there are still times when Fred shakes a little, but not to the degree he did in the past. A small, but important thing he can do now, is serve his wife a cup of coffee.

“I’m excited to tell people about my ability to manage my tremor through DBS. There is hope out there,” he said.

My Shaking Made Me Feel Like I Was ‘Going Nuts!’

March is National Essential Tremor Awareness Month and throughout the month we will be shining a light on people who have essential tremor. Everyone has a story to tell. We hope that these stories will resonate with others, validating the everyday struggles people with ET feel physically and emotionally. As we shine a light on these individuals, we are shining a light on ET and raising awareness. Please share these stories with others.

By Jody,

My tremors started when I was 21. My daughter was almost one-year-old when I noticed my head feeling like it was shaking inside but not noticeable to others. I went to my regular doctor and said, “I think I’m going nuts… I feel my head shaking and it’s not stopping.”

My doctor sent me to a neurologist who tested me and I got the diagnosis of tremors. At that time it was just my head shaking; but it went from not noticeable to others to very noticeable within six months. I was prescribed an anti-seizure medication.

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Then I also started doing my own research on essential tremor. My mother-in-law saw an older lady in the hospital waiting room one day and noticed she shook just like me. She started talking to her and found out her doctor prescribed Botox injections. So I made an appointment with that doctor who diagnosed me with both essential tremor and muscular dystonia. She prescribed many different medications including muscle relaxers, and most of the medications had bad side effects.

After a few years I started Myobloc injections. Those worked for about nine years. I then went to the Mayo Clinic to explore the option of DBS surgery but decided against it.

I went a few years without seeing a doctor then found another specialist. We again started the process of trying to find a medication that would help relieve my tremors. Today I have exhausted all of the medications out there that they use to treat tremors.

“Over the 20 years of me having this I now have tremors throughout my whole body. My head shakes, shoulders, trunk down to my legs. I do not stop shaking at all.”

I am now doing Botox under an orthopedic specialist. I also see a chiropractor and use CBD oil when the Botox runs out of my system.

I work in an office setting full time and have a cleaning business on the side so I work seven days a week. In my office job we have changed a few things to help me get along easier. I have been at this job for 22 years so they have seen the tremors progress with me as the years have gone by. I use weighted pens and pencils. I have a standing desk now so I can move around as much as I need to. I feel better the more I can move. If I’m not working and just laying around at home I hurt – my muscles hurt, my body hurts. But, I can still move. Some days are harder than others. Writing is getting harder.

I’m amazed at how many people have had this condition their whole life. I sometimes have to remind myself of the people who can’t work or can’t write at all because of their tremors. Mine are bad but others have them much worse than me.

Preparing for Your Doctor’s Visit

By Dr. Rodger Elble,
Department of Neurology
,
Southern Illinois University School of Medicine

Preparing for your visit with a movement disorder specialist will increase the odds of accurate diagnosis and appropriate treatment at an affordable cost. A complete and accurate medical history is crucial.

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Here are some things you can do to facilitate a successful clinic visit.

1.  Prepare a written chronological history of your problem. What was your initial symptom (e.g., hand tremor) and when did this symptom begin? It is important to estimate the time or age of onset as accurately as possible. This may be long before the time when your tremor and other symptoms became disabling or really bothered you. Describe how the tremor started (e.g., suddenly or gradually) and how the tremor has progressed. Which areas of your body were affected initially and subsequently? Has there been a recent or rapid worsening? If so, was this associated with other events or medical problems (e.g., a new medication)? Note any changes in your balance, coordination, gait, and speech. Tell your doctor about any involuntary movements other than tremor (e.g., body jerks, twisting movement of the neck or limbs).

2.  Note any medications, substances or circumstances that make your tremor better or worse. Prepare a list of all treatments you have tried for your tremor.

3.  Prepare a family history. Document any relatives with tremor or other neurological conditions such as Parkinson’s disease, dementia, dystonia, ataxia, neuropathy, etc.

4.  Prepare a list of past medical problems and note whether they had any effect on your tremor. A recent medical summary from your primary care physician will be helpful. Bring a complete list of current medications and their dosages. Your pharmacist can help you with this.

5.  Be prepared to discuss how your tremor affects your daily life. Which activities are affected most? How has your handwriting changed? How does tremor affect your occupation and social life? Has your tremor affected you emotionally? Have you been depressed? You should be as accurate and candid as possible.

6.  Do not stop any medication unless requested by your doctor.

Your doctor will perform a thorough neurological examination to assess tremor severity and look for abnormalities other than tremor. Patients referred for essential tremor frequently have some other condition that is revealed by a careful neurological exam. There is no test for essential tremor.

At the end of your visit, make sure you understand your diagnosis and treatment options. Ask questions. Discuss your goals and expectations with regard to your tremor, but understand that available treatment is not always adequate. Consider participating in a research study if one is available and appropriate for your condition. Ongoing and recently completed research studies can be found online at ClinicalTrials.gov. 

Wrapping Your Mind Around Head Tremor

(This is an article from a past issue of Tremor Talk magazine. It’s just a sampling of the stories we include in each issue. Annual donors to the IETF receive Tremor Talk magazine in the mail three times per year.)

By Arif Dalvi, MD, MBA
Director of the Comprehensive Movement Disorders Program
Palm Beach Neuroscience Institute 

Dr. Arif DalviThe term tremor refers to an involuntary shaking of any part of the body. While tremor in the hands is most common, head tremor can also occur. In patients with essential tremor, head tremor can be an isolated symptom or may occur in combination with hand tremor. Essential tremor is by far the most common cause of head tremor. Another cause is cervical dystonia, also known as spasmodic torticollis. Head tremor may also occur in patients with Parkinson’s disease. Stroke, head injury, and multiple sclerosis are other causes of tremor but are less likely to cause head tremor.

Hyperexcitability and rhythmic activity in the circuits of the brain are believed to be the underlying mechanism for tremor. One such circuit includes three areas deep in the brain called the red nucleus, the inferior olivary nucleus (ION), and the dentate nucleus. This circuit is responsible for fine-tuning voluntary movements. Proper function prevents any undershoot or overshoot of movements. An abnormal response in this circuit, especially within the ION, can lead to tremor.

Approximately 95 percent of patients with essential tremor present with hand tremor. However, about 35 percent of patients have head tremor either by itself or in conjunction with hand tremor. Some patients also have voice tremor. Hand tremor occurs mostly with posture, such as when holding an object away from the body and against gravity. This contrasts with hand tremor in Parkinson’s disease that occurs when the hands are at rest. Muscle rigidity, slowness of movement, change in posture and gait also occur with Parkinson’s disease but are uncommon with essential tremor. A lip or chin tremor may also be seen in patients with Parkinson’s disease.

Cervical dystonia can be another cause of head tremor. Dystonia refers to a state of abnormal muscle tone leading to painful muscle spasms and abnormal posturing of a part of the body. When the muscle spasms and abnormal posture affect the neck it is referred to as cervical dystonia. Sustained abnormal posturing of the head is a hallmark of cervical dystonia. An enlargement of the neck muscles may be observed in cervical dystonia but is unusual in essential tremor.

Other features include an asymmetric elevation of the shoulders, excessive eye blinking or blepharospasm, and spasms of the facial muscles. Like ET, cervical dystonia can spread to one or the other arm, in long-standing cases. However, unlike essential tremor the head tremor from cervical dystonia may be associated with neck pain due to dystonic spasms.

Patients with cervical dystonia may employ sensory tricks to reduce the severity of the tremor. Touching the cheek or chin (a geste antagoniste) is a commonly employed sensory trick. Head tremor with cervical dystonia has a directional component and is usually worse when looking in one direction and reduced when looking in the opposite direction. It may be possible when examining the individual to find a head position where the tremor almost disappears. This position is referred to as a “null point”.

The diagnosis of tremor remains a clinical diagnosis. An MRI or CT scan of the brain is usually ordered to rule out structural lesions such as stroke, multiple sclerosis or a midbrain tumor. In patients where there is a question of whether the problem is essential tremor or parkinsonism, a DaTscan may be ordered. This scan is targeted towards the dopamine transporter (DaT) in the brain which is deficient in parkinsonism but normal in essential tremor. Blood tests to rule out hyperthyroidism and, in younger patients, screening tests for Wilson’s disease may also be considered.

The treatment of tremor is guided by the underlying cause. Propranolol and primidone are the mainstay of treatment for essential tremor. Other medication options that are helpful include gabapentin and topiramate. Cervical dystonia may respond to treatment with benzodiazepines. Clonazepam, which is a long-acting benzodiazepine, may be preferred in comparison to shorter acting drugs such as alprazolam or lorazepam. Baclofen can reduce dystonia by acting on GABAB receptors. Tizanidine is an alternative to baclofen. However, since tizanidine can cause liver damage (in rare cases), monitoring of liver enzymes for the first six months is recommended.

Botulinum toxins can play a role in the treatment of head tremor, particularly in dystonic head tremor. Botulinum toxins block the release of neurotransmitters. This results in decreased transmission of the signal from nerve ending to the muscle, thus reducing the tremor. Repeat injections are required every three to four months.

Deep brain stimulation (DBS) surgery was approved by the FDA in 1997 for the treatment of tremor. However, the target in the brain varies based on the condition being treated. DBS surgery carries an approximately two percent risk of bleeding in the brain, hence it is only offered to patients with advanced tremor that is disabling and not controlled by medications. Head tremor can be more difficult to control than hand tremor and may require DBS surgery to be done on both sides of the brain.

Non-pharmacological methods to reduce head tremor rarely provide sustained benefit. Physical therapy is generally not useful, however, relaxation techniques can help reduce tremor as anxiety is often an exacerbating factor. There is no specific diet that is helpful but reducing caffeine intake can help reduce tremor.

Not every person with ET will be affected by head tremor. But if you are, it is important to talk to your physician so you understand what it is and what treatment options are best for you.

 

 

 

Surgical Treatment of Essential Tremor

(This is an article that Dr. Arif Dalvi wrote for our May issue of Tremor Talk magazine. It’s just a sampling of the stories we include in each issue. Annual donors to the IETF receive Tremor Talk magazine in the mail three times per year.)

By Arif Dalvi, MD, MBA
Director of the Comprehensive Movement Disorders Program
Palm Beach Neuroscience Institute 

Background
Many patients with essential tremor (ET) get relief with medications. However, some patients, despite trying multiple medications, have a disabling tremor affecting activities such as eating, writing or using tools. Severe tremor also leads to social embarrassment and isolation. Surgical options can significantly improve quality of life in such patients.

Surgical treatment for ET goes back many decades. Abnormal circuits in a deep brain structure called the thalamus misfire sending signals to the muscles causing a tremor. In the 1970s, Irving Cooper, a neurosurgeon from Columbia University in New York, introduced the idea of making a lesion (similar to a small stroke) in the thalamus to suppress these tremor circuits. However, long term experience shows tremor relief from this method called thalamotomy may wear off in a few years. Patients with tremor in both hands need a thalamotomy on both sides of the brain, leading to higher risk of complications including difficulty with speech compared with a lesion only on one side.

The Birth of DBS
To find the best target the patient undergoes brain mapping while awake. The area within the thalamus is given a test dose of electrical stimulation to see if the tremor subsides. Alim Benabid, a neurosurgeon from Grenoble in France, realized stimulation on a constant basis could provide long-term control of tremor. He developed a brain pacemaker connected to a wire in the brain targeting the thalamus and the idea of deep brain stimulation (DBS) was born. This is the most established surgical technique for control of tremor. DBS was approved by the FDA in 1997 for ET and is covered by Medicare and many private insurers for appropriate patients.

DBS has the advantage of not requiring a stroke-like lesion in the brain. Unlike with a misplaced thalamotomy, side effects can usually be reversed by turning the pacemaker off. Both sides of the brain can be targeted without inducing the kind of complications seen when thalamotomy is done on both sides. DBS settings can be gradually increased over the years if the tremor gets worse. The battery for the DBS pacemaker requires replacement every three to five years. It must be kept in mind that there is approximately a two percent risk of a brain bleed with initial electrode placement.

DBS results depend on accurate placement of the electrode. New types of electrodes allow electrical stimulus to be directed in different directions. These directional electrodes allow for good tremor control while minimizing side effects even without perfect placement. DBS technology continues to improve with directional electrodes, smaller and longer lasting pacemakers, and rechargeable batteries being some of the innovations.

MRI-Focused Ultrasound
MRI-Focused Ultrasound (MRI-FUS) is the most recent surgical option. High energy ultrasound waves are targeted to the thalamus with high-quality MRI imaging. The ultrasound beam makes a lesion like a thalamotomy. The procedure is done on an awake patient in an MRI suite. A lighter test dose is applied to see if tremor improves. If there are no side effects, a full intensity dose is applied. MRI-FUS does not require a burr hole in the skull or electrodes and pacemakers within the body. In this sense, it is “noninvasive,” but a misplaced lesion can still result in permanent side effects. Small numbers of patients with ET have undergone this procedure, usually with favorable results. How these patients will fare in the longer term remains to be seen.

Surgical option choices for severe tremor should be made under the guidance of a movement disorders neurologist highly experienced with these procedures.

 

ET Has Affected 5 Generations in My Family

By Shari Finsilver,
VP of the IETF Board of Directors

Increasing awareness about essential tremor (ET) has been my passion for almost 20 years.  But, I must confess … I was not very open about my tremors prior to this. In fact, I did everything imaginable to hide them, even from my parents!

My courage came from all the members of my support group. It is often said that when we volunteer, we get much more back than we give. Well, that was so true in my case when I decided to start a support group in Michigan in 2000. I marveled at the candor, courage, and self-pride in many of those members and, eventually, decided to follow their lead to become more open about my own ET.

Joining the IETF Board
When I was invited to join the IETF Board of Directors in 2001, I found another platform that I could use to further raise awareness, while also getting involved in education programs, fundraising, and research. I am committed to expanding the work of the IETF, the most recognized organization helping ET patients and families.

ET began challenging my life at 11 years old. I’ve heard it said that those of us with ET are much more intelligent and creative. Well, I’m not sure I would go so far as to say that … but I did become very creative in developing ways to cope with these troubling tremors! When the IETF compiled a list of coping tips, I was able to share all of mine with all of you.

The Choice to Have DBS Surgery
After having lived with increasingly challenging ET for almost 40 years, I decided to have deep-brain stimulation (DBS) surgery in 1999. DBS changed my life.

ET has, so far as I know, affected five generations in my family. I will continue to do everything in my power to help those of us with ET get more effective medical treatments, increase awareness so the public doesn’t misjudge and label us, better educate the medical community, and fund research that will discover a cure.

Join Us to Help Raise ET Awareness
I hope I can count on each of you to do something that helps the ET community. So many great ideas are listed on the IETF website. If all of us raise our voices about ET, we can educate the world.

 

 

New, exciting changes for DBS patients

Activa PC+SResearchers at the University of Washington are developing a new device to help monitor and record tremor changes in Deep Brain Stimulation (DBS) patients. With the new Activa PC+S device, developed by Medtronic, stimulation can be turned on and off, leading to battery conservation of the device — an issue for current DBS technology. A person with essential tremor could detect their tremor and adjust the stimulation within clinician set limits.

The Medtronic Activa PC+S sits in the chest with electrodes, electrical conductors that make contact with a nonmetallic part of the circuit, wired into the brain. The electrode doesn’t have to be used to stimulate but since it is present, it can still be used to record tremor to later analyze for adjustments, if needed.

Researchers are also developing an Android smartwatch app to communicate with the piece of hardware from smartphones and smartwatches. When the patient senses the tremor, they can enable stimulation and modify within parameters in real time without a computer or without visiting their physician.

This device is not yet FDA-approved and still in early research stages. For more information visit, The Daily.