Remembering Sara

I met Sara about 5 years ago when she came to our Silver Spring, Maryland support group meeting with her sister. I’ve known a number of women with severe voice tremor. Sara was the worst case ever. I could not understand a word she said. Sara was very helpful when HopeNET made its presentation to Congressional Legislative Assistants for Healthcare. The Congressional staffers were awestruck when Sara got up & spoke. They saw firsthand how severe Essential Tremor can be. Sara came to a few more meetings but soon stopped coming. Recently her sister contacted me & told me Sara had died in a nursing home. She had choked to death in the middle of the night.

Lou Devaughn in our Falls Church, Virginia group was the first person to bring the connection of swallowing & ET to my attention. Since then, I have found anecdotally that it involves a lot of people who have ET.

In speaking with Dr. Paul Fishman of the University of Maryland, I asked about the connection. He said that he felt that there was one. Of interest, he said that currently the cause of death for Parkinson’s is pneumonia & choking.

I have heard repeatedly that ET is benign – you don’ t die from it. I now take exception to that statement. I believe Sara died from ET. I wanted so badly to be of some help to her. I’ve thought a lot about her since I found out she died.

 

“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

Hi ET Community,

December 1 will be a watershed event for HopeNET & Essential Tremor. In addition to the play, Swimming with Kate, which is our fist step in increasing awareness of ET especially among doctors, there will be a distinguished panel of doctors – Drs. Haubenberger & Fishman. In August 2016, Focused Ultrasound was performed on me. Dr. Fishman was the neurologist. Dr. Haubenberger has subsequently studied the result. He & his team then created a poster. They displayed the poster at the annual Movement Disorder Society in June in Hong Kong (find it attached). As you can see, it has my MRI’s taken prior & post the procedure. This is your opportunity to ask questions about this treatment as well as others for ET.

Don’t miss this!

— Peter

MDS_Poster_V1.5

 

Experts Review Surgical Treatments for Essential Tremor

We are fortunate that ET experts recently reviewed surgical treatments for ET to write this paper entitled Surgical Treatments for Essential Tremor. They include DBS (deep brain stimulation), FUS (focused ultrasound surgery/ablation), SRS (stereotactic radiosurgery), and radiofrequency ablation treatment. The authors detail when surgical treatment is an option (when tremor symptoms are severe) plus they cover complications and outcomes, including limited effectiveness and possible need for repeat or additional surgery. Details are also included for those with voice and head tremor. Patients may have tremors bilaterally, that is on both sides of their body, however certain surgeries are found to have better outcomes if the procedure is done unilaterally, meaning the outcome affects only one side and is therefore a partial solution.

For a better understanding of what is happening in the brain of someone with ET, read the paper’s introduction. It explains how the tremor signals travel along a communication loop in the brain known as the corticobulbocerebellothalamocortical loop. It also tells how the surgeries for ET target the ventralis intermedius (Vim) or the posterior subthalamic area (PSA) right below the Vim, and surgical stimulation in these spots disrupts the signals in the loop, lessening tremor.  If we can locate a visual image of this loop we will post it! The authors’ key issues, conclusions and expert commentary are worth reading especially for those interested in surgical options with supporting data. Overall, the authors, Elble, Shih and Cozzens comment on the rapid improvements being made in surgical treatments.

This paper was supported in part by a grant from the Illinois-Eastern Iowa District Kiwanis Neuroscience Foundation.

Surgical treatments for essential tremor

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

 

 

Quality Of Life Research

While anecdotally we may know the quality of our daily lives are affected by our Essential Tremor, what does the clinical research show? Here are links to a few past study articles on just that:

Quality of Life in Essential Tremor Questionnaire (QUEST): Development and initial validation

The psychosocial burden of essential tremor in an outpatient- and a community-based cohort.

The authors of the first study above indicate their goal of developing sound, reliable measures of quality of life for ET patients. Yay!

Both articles have results of study questionnaires where participants self- reported on their symptoms. In the first study participants reported on the negative physical impact of their tremor, the psychological impact, and tremors’ impact on communications, work/finance, and hobbies/leisure. Factors used in the second study were depression, personality traits, psychiatric components, coping strategies and a quality of life health survey.

It is commendable in the first study that the data are specific to the body location of ET symptoms, meaning that voice, head, arm and leg tremor results are included, not just hand tremor.  As would be expected of those with voice tremor, the data show the severe impact their condition has on communications. And in the second article, the study authors make note of interesting results that show significant, negative psychosocial impact of ET that is not closely associated with or dependent on the severity of the tremor. This means that even if physical tremor symptoms are not considered severe, they can still have a hefty, negative psychosocial impact.

Overall it appears self-reported questionnaires are developing into something meaningful. The clinical researchers or study authors are hopefully connecting some dots, having learned about the physical, social and neuropsychological components of this condition, and knowing more clearly now how everyday life is impacted for the ET population. Click on the links for more information about the individual studies (but be forewarned it is not easy reading).

UMBC Accessibility Research Study

We received the following information from the University of Maryland, Baltimore County’s Human-Centered Computing program about their need for participants for a short survey plus an interview:

In this project, we are designing and evaluating adaptive systems to support the use of the computer mouse and other pointing devices when navigating the Web. We are looking for 15-25 individuals who are 65 years or older and who are experiencing permanent or intermittent pointing problems due to hand tremors, arthritis, or other conditions that impact fine motor hand movement. The participants will be interviewed about their computer use. They will also use a computer system that we are developing called PINATA and provide feedback about their experience.

To learn more about the study, view the attached flyer.
To learn more about PINATA, click here.

NIH ET Trial with Research Doctor from Australia

I have participated in many ET trials at the National Institute of Health (NIH) located in Bethesda, Md. – just outside Washington. It is an outstanding organization whose work benefits the whole world. As such, NIH brings doctors from all over the world to work there.

I am now participating in a new trial at NIH conducted by Dr. Dietrich Haubenberger. He is great and from Vienna. For this trial, he is being assisted by Dr. Alex Fois of the University of Sydney. My ET is hereditary. My mother had it as did her mother. They were Australian (Perth). I therefore have unknown relatives in Australia who have ET.

We at HopeNET want to be of help to anyone who has ET regardless of where they are in the world or their circumstances. It was a real pleasure spending time with Dr. Fois.

— Peter Muller

Dr Alessandro Fois BSc (Adv; Hons I, Medal) BM BCh (Oxon) MRCP FRACP
Clinical Associate Lecturer, University of Sydney
Movement Disorders Fellow
Department of Neurology – A/B Block Level 1 Westmead Hospital