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.

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.

 

Milwaukee ET Event

We had a great time in Milwaukee with 80 people attending the extremely educational ET seminar. The presentations were very well done and provided a lot of information. Dr. Pahapill talked about his 20 year experience in the treatment of ET with deep brain stimulation and Dr. Blindauer reviewed the many medications that are often used and why some may not be successful in the treatment of ET.

For more information about the Froedtert and Medical College of Wisconsin Neurosciences Center go to: http://www.froedtert.com/SpecialtyAreas/ParkinsonsMovementDisorders/

 

 

 

 

Where Has My Button Been?

Omaha 2 WHMBBHello Everyone!

We had so much fun at the Omaha Education Seminar and we all learned a lot from Drs. Torres-Russotto and Follett. We want to give both of them a huge thank you for sharing their time and expertise about ET. To learn more about the Movement Disorders Center at the University of Nebraska in Omaha go to http://www.unmc.edu/neurologicalsciences/movement_disorders.htm.Omaha Event WHMBB

Please join us in Irvine, CA for the upcoming event on Saturday, April 27. You can learn more at http://www.essentialtremor.org/Seminars. I would love to meet and share in the experience with you.

How DBS Surgery Works – Research Indicates Possible Answer

Neurologist Dr. Harrison Walker says his team may have found the possible answer to how deep brain stimulation (DBS) works.

Deep brain stimulation, used for 15 years for essential tremor patients and 10 years for Parkinson’s disease patients, can stop uncontrollable shaking in patients with certain neurological diseases. Previously, no one knew how it worked.

Read more on our ?Essential Tremor in the News? webpage.