Living with Essential Tremor (ET)

Update – Joint Essential Tremor Support Group, June 6, 2015

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Essential Tremor (ET) affects 7 million Americans.  It is often confused with Parkinson’s disease.  If you, a family member, or a friend have ET, you are invited to attend a free meeting sponsored by HopeNET, an all-volunteer, non-profit organization.

This joint meeting of all the HopeNET support groups in Virginia & Maryland will be held on June 6 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910.

There will be two guest speakers. Their names, organizations, and topics are – Dr. Kathleen Maguire-Zeiss, Georgetown Univ., ET & the circuitry of the brain and Dr. T. Sean Vasaitis, Univ. of Maryland Eastern Shore, Essential Tremor & Tai Chi.   Peter Muller will also give a brief summary of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12.

You will need to register for this. To do so, please call Peter Muller at 703-543-8131 or one of the contact people at each group – Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley.

Joint Essential Tremor Support Group, June 6, 2015

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Essential Tremor (ET) affects 7 million Americans. It is often confused with Parkinson’s disease. If you, a family member, or a friend have ET, you are invited to attend a free meeting sponsored by HopeNET, an all-volunteer, non-profit organization.

This joint meeting of all the HopeNET support groups in Virginia & Maryland will be held on June 6 from 10am until noon at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910.

Our guest speaker will be Dr. Stan Anderson, a neurosurgeon at Johns Hopkins Hospital. His presentation will be on Essential Tremor & the circuitry of the brain and will occur less than a month after the conference at NIH on Essential Tremor in which this topic of ET & the brain circuitry will be one of the primary discussion points.

Information about HopeNET may be found at www.theHopeNET.org. You will need to register for this. To do so, please call Peter Muller at 703-543-8131 or one of the contact people at each group – Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley

Essential Tremor Conference GoFundMe Campaign

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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

Essential Tremor Conference GoFundMe Campaign

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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

Upcoming Essential Tremor Conference

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In a little more than a month, NIH will host the Essential Tremor Conference – bringing together experts on ET from across the country as well as some from other parts of the world. In speaking individually with members of HopeNET’s medical advisory board, they are optimistic. The staff from the National Institute of Neurological Disorders & Stroke has done a good job of organizing the conference. They have made an effort to include some researchers that are outside the usual ET research community. They have also made an effort to include younger people. In my conversations with the staff, I get the sense that they want this conference to be a success that ultimately benefits all of us with ET.

HopeNET is playing a role in several different ways in the conference. I will be there attending the sessions. I look forward to sharing with you what I learn. If you have any ideas that you’d like to share with me prior to the conference, please let me know.

Peter Muller

NIH Studies into Motor Movement Disorders

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On February 12, 2015, Dr. Dietrich Haubenberger, Director of the Clinical Trials Unit with NIH/NINDS, gave a captivating presentation and discussion on Essential Tremor research and its relationship with other motor movement disorders.

While there continues to be research to find a common factor that can be used in the treatment of ET, it has become increasingly evident that ET may be migrating back to an overall descriptive for multiple sub-categories of specific movement disorders that are being discovered and defined in greater detail.

ET vs Dystonia

As the result of more recent research, it is believed that some previous ET diagnosis may actually be Dystonia. Among the key indicators are, if only one side is affected by tremor and has cramp-like features, it would likely will be Dystonia. Areas that can be influenced are a person’s walking gait and head-eye movement coordination.
A number of musicians, athletes in repetitive motion sports, and writers are known to have Dystonia.

The Cerebellum

The Cerebellum, also known as our ‘Little Brain’, is a clearing house center for muscle movement. While it does not initiate movement, it does mitigate the movement and acts as a gentle braking mechanism to allow coordinated motor movement. Otherwise, our muscle movement would be sporadic and uncontrolled. This coordination between initiated neural pulses and the Cerebellum allows constant adjustments and learning adaptation for fine motor movement.

Time went by quickly during Dr. Haubenberger’s presentation and we all look forward to further presentations and discussions with him in the future as his research continues.

Bruce Edwards
Falls Church Support Group

Higher prevalence of migraine in essential tremor: A case-control study

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As I have related before, there are other symptoms of Essential Tremor (ET) beyond the shaking of hands, head and voice. It is an area that requires much more research. In HopeNET’s groups, the issue of migraines has come up a number of times. In the meantime, my daughter who supposedly does not have ET has suffered badly from migraines.  As my ET is hereditary, she & I had discussed the connection between ET & migraines a number of times. Then she found this article doing an internet search and forwarded it to me. It substantiates the connection between ET and migraines.

This raises another important issue of children who supposedly don’t have ET. Do all the children inherit ET to some degree? This question needs to be answered, and if so, what is the effect?

I welcome any comments you have.

Peter Muller
Executive Director
HopeNET

Higher prevalence of migraine in essential tremor: A case-control study

Yueqing Hu, Wenjing Tang, Ruozhuo Liu, Zhao Dong, Xiaoyan Chen, Meiyan Pan and Shengyuan Yu

Abstract

Background: The existence of an association between migraine and essential tremor has long been controversial. The prevalence of migraine in essential tremor patients was surveyed to explore the association between the two diseases.

Methods: A case-control clinical study was conducted to investigate the prevalence of migraine in 150 consecutive
essential tremor patients and in 150 matched controls without tremor. Detailed information about essential tremor
and migraine was obtained using a structured questionnaire at a face-to-face interview. Moreover, a functional variant of the dopamine receptor D3 gene (Ser9Gly, rs6280) was studied in 46 essential tremor patients with and without migraine using direct sequencing analysis.

Results: The prevalence of lifetime migraine in essential tremor patients was significantly higher than that in controls (22.0% vs. 12.7%; p¼0.035; odds ratio¼1.95; 95% confidence interval¼1.05–3.60). No significant difference was found in the migraine features between the essential tremor and control groups and most tremor characteristics were no different in essential tremor patients with and without migraine. A higher male prevalence of essential tremor patients without migraine was observed. Moreover, 44 of 46 (95.7%) essential tremor patients had the dopamine receptor D3 Ser9Gly variant, but no significant difference was found in the frequencies of the variant between essential tremor patients with and without migraine (87.5% vs. 100.0%; p¼0.22).

Conclusion: Our data suggest that essential tremor patients have a higher risk of lifetime migraine than do controls and the dopamine receptor D3 Ser9Gly variant may be lower in essential tremor with migraine than the general essential tremor patients.

Keywords
Essential tremor, migraine, dopamine receptor D3 gene, risk factor

Date received: 5 January 2014; accepted: 12 March 2014

 

Full Article

MRI Focused Ultrasound Procedure Presentation

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The University of Maryland in Baltimore is performing the MRI Focused Ultrasound procedure. Charlene Aldrich from the Department of Neurology there made a presentation about it on February 5 to the Silver Spring support group. Charlene did an outstanding job of interacting with the group. In the process, she made clear her empathy for them and her desire to really help. The attached is the slideshow she used.

While the FDA has yet to approve it. The results so far are very promising.

Peter Muller
Executive Director

Presentation Slides (pdf format)

 

Charlene Aldrich and Peter Muller

Charlene Aldrich Presentation

 

Charlene Aldrich Presentation

Becky Epton – ET Hero

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Becky Epton was a middle-aged woman who lived in suburban Virginia outside Washington. She had a bad case of Essential Tremor which affected her hands, head and voice. She regularly came to our Falls Church support group. At the June 9, 2011 meeting, we discussed the new procedure – MRI Focused Ultrasound. Immediately after the meeting, Becky contacted the University of Virginia about having the procedure. That September, she was the twelfth person to have it.

Becky & I communicated extensively by phone and email both before and afterwards. I was so impressed with her courage having such a new procedure. She didn’t hesitate at all.

It was a success. Previously the tremor was so bad in her predominant hand that she had to learn to use her other hand to do things. Afterwards the tremor in her predominant hand was almost non-existent. She had to learn to use it again. Her disappointment was that she had hoped it would improve the tremor in her voice and head. The people at UVA had told her beforehand it would not, and it didn’t.

Becky came to our support group meeting afterwards and related her experience. She came a few more times after that. I was always very happy to see her as it was so nice to see an ET success story. But she stopped coming because she was unable due to other health problems.

She developed a very serious and debilitating disease. She died last week. Her last few months had been very difficult. She was my hero. I had always been impressed with her courage and told her so. She deserved much better!

Becky, I’ll miss you.

Peter

Current Status of Essential Tremor – December 2014

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Dr. Dietrich Haubenberger, the Director of the Clinical Trials Unit of the National Institute of Neurological Disorders & Stroke’s Intramural Research Program, made the following presentation to both the Columbia and Silver Spring groups. He was accompanied by members of his staff – a neurologist (in Columbia from Thailand & in Silver Spring from Romania) and a neuroscientist in both situations. By the way, Dr. Haubenberger is from Austria. After the presentation, members of the support groups had the opportunity to ask questions of Dr. Haubenberger and his staff.

Peter Muller
Executive Director

Silver Spring Presentation (.pdf)