One of the three speakers at our symposium on September 19 was Aqueasha Martin. She is conducting a research study at the University of Maryland at Baltimore County on how to improve software to assist those with disabilities including tremor. The following is the powerpoint presentation she gave. If you wish to participate in the study, please contact her at http://aqueashamarie.com/contact/
research_umbc_amm
You will need to register by either calling Peter Muller at 703-543-8131 or one of the contact people in each group – Walter Ebmeyer, Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley.
This symposium, with the ET support groups in Pennsylvania, Virginia & Maryland, will be held on September 19 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910. The theme of the symposium is Essential Tremor research and how those with it can participate in the trials. The three guest speakers will make a presentation on their respective research as well as answer any questions. There will also be an update on the results of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12 – as well as what has transpired since.
You will need to register by either calling Peter Muller at 703-543-8131 or one of the contact people in each group – Walter Ebmeyer, Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley.
This symposium, with the ET support groups in Pennsylvania, Virginia & Maryland, will be held on September 19 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910. The theme of the symposium is Essential Tremor research and how those with it can participate in the trials. The three guest speakers will make a presentation on their respective research as well as answer any questions. There will also be an update on the results of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12 – as well as what has transpired since.
You will need to register by either calling Peter Muller at 703-543-8131 or one of the contact people in each group – Walter Ebmeyer, Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley.
This symposium, with the ET support groups in Pennsylvania, Virginia & Maryland, will be held on September 19 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910. The theme of the symposium is Essential Tremor research and how those with it can participate in the trials. The three guest speakers will make a presentation on their respective research as well as answer any questions. There will also be an update on the results of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12 – as well as what has transpired since.
You will need to register by either calling Peter Muller at 703-543-8131 or one of the contact people in each group – Walter Ebmeyer, Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley.
This symposium, with the ET support groups in Pennsylvania, Virginia & Maryland, will be held on September 19 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910. The theme of the symposium is Essential Tremor research and how those with it can participate in the trials. The three guest speakers will make a presentation on their respective research as well as answer any questions. There will also be an update on the results of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12 – as well as what has transpired since.
Abstract
Background: Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care.
Methods: A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of essential tremor (ET) patients. A link to the questionnaire was included in the monthly e-newsletter of the International Essential Tremor Foundation. The questionnaires were completed online and data were available in electronic format.
Results: There were 1,418 respondents. One in three respondents (i.e., 31.4%) indicated that the doctor was not even ‘‘moderately well-educated’’ about ET. Only 11.8% of respondents were satisfied with their care. Respondents raised a multiplicity of issues that were not being addressed in their current care. The top items were psychological services and support (33.9%), physical or occupational therapy (28.6%), handling embarrassment and social effects of tremor (15.8%), feelings of not being in control (13.7%), a detailed report and a more quantitative way of assessing tremor and tracking progression (12.7%), better counseling about current treatment and medications (11.9%), empathy, compassion and a feeling of being heard (11.6%), a treatment approach other than just medications and surgery (11.2%), and a discussion of all symptoms aside from tremor (e.g., cognition, balance).
Discussion: Patients with ET identified a broad range of issues that they felt were not addressed in their treatment; indeed, only one in 10 patients reported that they were satisfied with their care. It is hoped that patient-centered approaches such as this will lead to improved models for the care of patients with this common chronic disease.
Elan D. Louis , 1,2,3* , Brittany Rohl 1 & Catherine Rice 4
1 Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA, 2 Department of Chronic Disease Epidemiology, Yale School of Public Health, Yale University, New Haven, CT, USA, 3 Center for Neuroepidemiology and Clinical Neurological Research, Yale School of Medicine, Yale University, New Haven, CT, USA, 4 International Essential Tremor Foundation, Lenexa, KS, USA
Defining the Treatment Gap in ET full article (pdf)
Essential Tremor (ET) affects 7 million Americans. If you, a family member, or a friend have ET, you are invited to attend a free symposium sponsored by HopeNET, an all-volunteer, non-profit.
This symposium, with the ET support groups in Pennsylvania, Virginia & Maryland, will be held on September 19 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910. The theme of the symposium is Essential Tremor research and how those with it can participate in the trials. The three guest speakers will make a presentation on their respective research as well as answer any questions. There will also be an update on the results of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12 – as well as what has transpired since.
Information about HopeNET may be found at www.theHopeNET.org. You will need to register by either calling Peter Muller at 703-543-8131 or one of the contact people in each group – Walter Ebmeyer, Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley. As HopeNET is now doing more, please make a donation by going to our webpage or by mailing a check to 14425 Coachway, Centreville, Va. 20120.
Kelly Naranjo is going to be a speaker at the September 19, 2015 Symposium discussing a new study as mentioned below in her letter to HopeNet. Please contact her at tremor@yale.edu if interested.
Dear Peter,
My name is Kelly Naranjo and I am one of the new research associates at Yale University working under Dr. Elan Louis in a new study looking at the genetics of essential tremor in families. I have been reading a bit about your efforts to increase awareness of essential tremor and it is truly remarkable, your open letter in HopeNet is especially moving. I think that for the majority of the population, it is very difficult to understand the underlying effects of any medical condition unless they themselves or a loved one suffers from it. That is why education and information is always so important and I truly applaud all your efforts.
I am reaching out to you today because I wanted to tell you a bit more about our new study. I think you might smile a bit because due in part to advocates like yourself, we have more people interested in funding research and working towards finding more information about essential tremor, its causes and in the future a cure. In the previous study FASET I- family study on essential tremor- the research team also looked at genetic factors and a lot of knowledge was gathered, such as the correlation of ages of onset of tremor in various family members. Unfortunately, because the NIH only funded the project for three years and the budget was limited it was not possible to look at unaffected family members.
I wanted to let you know that FASET II, is currently the largest ever NIH funded grant ever, working with participants suffering from essential tremor. The funding period for FASET II is five years and our budget is a lot more generous. This time around we will be collecting samples for DNA analysis for affected as well as unaffected family members. There have been some proposed affected gene loci and having DNA information for the unaffected family members will confirm if any of the proposed gene clusters is a genetic factor.
I wanted to also add that recruiting participants and their families will be a huge effort and we are asking for your help! As an ET advocate and public speaker, I was wondering if perhaps you could help us connect with your network and people who might be interested in participating in this study? I would love to speak on the phone and tell you a bit more about what exactly we are we doing and if you are interested I can even put together a publication package about the interesting findings from the previous study. Please let me know when would be a good time talk on the phone, or if email is easiest.
My contact information is:
Kelly V. Naranjo, B.A Postgraduate Research Associate
Yale School of Medicine Department of Neurology
Thank you! And I look forward to hearing from you soon.
Best, Kelly
One of the speakers at the September 19 symposium at Holy Cross Hospital will be Aqueasha Martin speaking about a research study that they are conducting at the University of Maryland, Baltimore County.
AbstractMany graphical user interfaces are not accessible for individuals that find it difficult to use a mouse or other pointing device. In this talk, I will introduce research that focuses on designing assistive technology for people that find it difficult to use pointing devices (e.g. computer mouse) due to age or physical impairment. We use a human-centered approach where we engage individuals with varying pointing abilities in the design process to get their feedback to improve our designs. Using this approach we hope to improve the future acceptance of our technology with these population. The long-term goal of this research is to make computer and Internet access universally accessible to all users and to help individuals become or remain independent computer users for as long as they wish.
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