Presentations

Research Study Focus on Improving Treatment of ET with the Use of Mobile Devices

Five months ago in October New Touch Digital, LLC, a software company with a vision for improving Essential Tremor treatment through technology, came to several Maryland ET support groups to express their research study ideas. By collecting measurable data about ET symptoms on tablets or computer devices, information on a patient’s symptoms could be conveyed to the patient’s neurologist.  This data gathering process is understandably important since ET symptoms are not always readily apparent at a short doctor’s office visit. See New Touch Digital’s easy-to-understand description of the research by clicking here.  They are about to embark on their study in the D.C. Metro area and plan to select a limited number of participants, therefore the participation inclusion criteria for the study is given below.

ET inclusion criteria and time line

 

 

The Huge Role Technology Can Play in Essential Tremor Treatment: New Touch Digital

Peter Muller of HopeNET recently met members of New Touch Digital, a company that seeks collaboration on their technological approach to improving communications between doctors and  Essential Tremor patients through technology. Their approach is detailed in this New Touch presentation . Click here to learn about their simple new vision for better Essential Tremor treatment.  Peter is excited and thinks you will be too!!

NewTouch_HopeNet_Volunteers (1)
Read about New Touch and the exciting way you can get involved!

Is Having Essential Tremor a Real Risk for Falls?


By Dr. Janice Sallitt, PT, DPT, NCS / JVS Rehab.

The answer to the above question is not a simple yes or no!

As is often the case, it depends on several factors: one of them being where the tremor is located in an individual. The most current medical view is that Essential Tremor (ET) is a syndrome, with tremor being the most obvious symptom. In some cases, it may be the only symptom.

Recent research has shown that tremor of only 1 arm did not show increased risk for imbalance; tremor of the head, jaw, and/or voice did show increased imbalance and fall risk.

Another factor in increased fall risk and/or increased imbalance in a person with ET is age. Persons with ET who are older than age 70 also correlated with increased imbalance and higher fall risk.

At this time, there is little evidence to show the effects of a physical therapy balance/fall prevention program in people with ET; however, in other neurological syndromes, there is a significant amount of evidence over the past 2-3 decades showing decreased fall risk. There is an assumption that, if studied, there would be a high probability that a similar physical therapy program to address the balance deficits would help to lower fall risk.

I hope you find this information helpful and that we can begin much needed studies in this area of ET.

(The above information was a summary of my June 2nd talk to the ET support group in Howard County, MD.)

Join us at this Thursday’s ET support group in Silver Spring, Maryland

Please note this meeting starts at 3pm, not the regular 10:30am time. Dr. Dietrich Haubenberger of NIH will speak about the current status of ET research.  He has spoken previously to our group. To say he is an expert on the subject is an understatement.  You won’t want to miss this meeting!

 

Maryland Essential Tremor Support Group Welcomed Dr. Paul Fishman to Meeting

 The Columbia, Maryland ET support group was pleased to welcome Dr. Paul Fishman on 2/3/17 as a guest speaker for the monthly meeting at The Wellness Center. Dr. Fishman performs both Deep Brain Stimulation (DBS) surgery and the newer MR-guided Focused Ultrasound Surgery (FUS) on ET patients.

We were fortunate to have him visit and share his informative presentation with us.

Click here for presentation notes.

Dr. Dietrich Haubenberger of NINDS/NIH Gives Presentation On ET Outlook

title-page-et2016-presentationWhen we founded HopeNET 5 years ago, we felt that the thing that the ET community needed most at that time was HOPE – hence the name. In the meantime, we have strived hard to bring some hope to all with ET. Accordingly, HopeNET played a key role in having the ET conference at NIH in May 2015. Since that conference, there has been a big increase on the part of industry in developing new treatments for ET. Dr. Dietrich Haubenberger of NIH is probably in the best position to know what is going on with ET. He came to the Falls Church, Virginia ET support group on October 14th and made the attached presentation, Essential Tremor 2016: A look into the pipeline. There has never been a better time than right now for hope – for all of us in the ET community.

— Peter

Essential Tremor Symposium at Holy Cross Hospital

Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.
Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.*

The June 6th Essential Tremor support group meeting at Holy Cross Hospital in Silver Spring, MD brought together close to 50 members of area Essential Tremor support groups from places like Silver Spring and Columbia, Maryland and Loudoun County and Falls Church, Virginia. There were two speakers preceded by remarks by Peter Muller from HopeNet. Muller informed the audience about what happened last month at a conference HopeNet worked to arrange, held at the National Institute of Neurological Disorders and Stroke (NINDS), a part of NIH. Forty neurologists and ET researchers attended the conference. What they agreed on is that treatment for ET is not possible if they do not know what the condition is. ET presents differently in each person, with varying symptoms such as hand tremors, head tremors, voice tremors, etc., and there can be overlap with other conditions such as Dystonia. These experts decided it would be beneficial to use hand tremors as the focal point to pinpoint what ET is, which suggests there will be upcoming studies.

Moving on, the support group audience was fortunate to hear from Dr. Maguire-Zeiss of Georgetown University’s Department of Neurology who gave a brief overview of the mechanisms in the brain thought to be involved in ET such as the cerebellum, motor cortex and thalamus. There is a question about the role the inferior olive plays as well. Maguire-Zeiss focused on neurons and likened the movement of neurons in the brain to an (electric) circuit and pointed out that if there is a “hiccup in the loop,” that can lead to more body movement (as seen in ET) or less body movement (as seen in Parkinson’s Disease).

Another guest speaker was Dr. T. Sean Vasaitis, Professor of Pharmaceutical Sciences at University of MD, Eastern Shore, who has ET himself and is a practitioner and instructor of the Chen style of Tai Chi. Dr. Vasaitis spoke about body control and elaborated on the benefits of Tai Chi such as reducing stress, releasing tension, improved calm, sleep quality and other cognitive functions. He is exploring the idea of a study on the effects Tai Chi can have on ET patients and speculated that starting out there would be a suggested practice of Tai Chi 2-3 times per week.

HopeNet organized this support group meeting and continues to work toward helping people with ET. Another similar meeting of these support groups is likely to be planned for the fall season, and will again be open to other interested individuals.

Please check www.thehopenet.org for upcoming schedule and registration information.

Lisa Gannon
Silver Spring Support Group Member

 

* PHOTO BY LISA GANNON

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

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

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