“Swimming with Kate” Play Well Received

The feedback from those who were there on Saturday for “Swimming with Kate” has been universally very positive. As one woman related to me Mary Cae, the actress, was “right on”. The woman also said that the emotions Mary Cae expressed about living with her ET, the anger & frustration, were identical to what she has felt. The performance was gut-wrenching at times. I felt that it broke through the barrier that many doctors place before us – “you shake a little bit, no big deal, here’s a prescription for propranolol“. In other words, it clearly showed the emotional strain that most of us face in our everyday lives in dealing with ET.

— Peter

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