Differentiating PD from ET funding announcement for biomarkers

http://grants.nih.gov/grants/guide/pa-files/PAR-16-112.html

Excerpt:

Differential diagnosis of PD from other parkinsonian disorders, such as Essential Tremor (ET), Multiple System Atrophy (MSA), Corticobasal Degeneration (CBD) and Progressive Supranuclear Palsy (PSP), can be clinically challenging, particularly during the early disease stages. There is no definitive biomarker for PD or for other atypical neurodegenerative parkinsonian disorders during life. This FOA seeks to better fill these scientific gaps.

Katrina A Gwinn MD
NINDS-NIH

Trequant

WatchMarch 14, 2016 – Last week I received a telephone call from Pakistan. The caller, from Trequant, explained that they were trying to increase awareness of a device they are developing. It is identical to and worn as a wristwatch. As I could see real potential for Essential Tremor, I forwarded information on the device & organization to Dr. Dietrich Haubenberger at NIH. He responded to me that it merited attention. I have subsequently facilitated direct contact between Dr. Haubenberger & Trequant. I will keep you updated on further developments.

Peter

http://www.trequant.com/

Hope for all of us with ET

We have had little on the blog for the last couple of months. That does not mean that we haven’t been busy. Quite the contrary, some very important things are in the works.

Prior to the “Essential Knowledge – Gaps in the field of Essential Tremor” conference held at NIH in May of last year, I spoke with Dr. Katrina Gwinn, the principal organizer of the conference. We both agreed that there must be follow-up to the conference. I can assure you that there has – with more to come.

One of the intangibles that has occurred is a greater recognition that we with ET need more attention. In and of itself, it is very important. HopeNET was founded on the central theme of hope. Let me assure that there grounds for hope today.

Three principal themes – Common Data Elements, more research into differentiation of the movement disorders, and Essential Tremor Centers of Excellence – are coming together to create a joint basis for making real progress with ET.

Let me assure you that the ET researchers with whom I deal, recognize and empathize with what we have to face in life. They do see the impact of ET on the quality of our lives.

I am excited about the future. There has never been a better time for ET research, and many of you know I would not have said that several years ago.

Stand by for tangible, good news. It will be here shortly!

Peter

Thank You!

Thank YouI want to thank the members of HopeNET’s Medical Advisory Board, Dr. Fasano, Dr. Louis, Dr. Nahab, Dr. Testa, Dr. Vaillancourt & Deb Zeller, for their invaluable guidance in 2015. Their assistance has been very helpful.

I would also like to thank the following – Charlene Aldrich, Dr. Elbe, Dr. Gwinn, Dr. Halperin, Dr. Haubenberger, Dr. Lowell, Dr. Maguire-Zeiss, Dr. Van’t Veer, & Dr. Vasaitis. They also provided invaluable guidance & assistance.

In 2016, I look forward to continue to work with them..

Peter Muller
Executive Director, HopeNet

Meals on Wheels

Sandwich cut in halfMy shaky hands make it increasingly tough for me to prepare my own meals, and I was startled when a friend suggested an obvious source of help – Meals-on-Wheels. They now deliver two meals at about 11am every day except weekends, and I pay them monthly what amounts to about $4 per day. What do I get? An entree with two vegetables wrapped in a tray and aluminum foil that I transfer to a dinner plate and microwave, and a nice sandwich saran wrapped to preserve its freshness. Add to that a container of skim milk, a roll and butter, a dessert, fruit, and sometimes a mixed salad and dressing. The wonderful friendly people who deliver are also a daily check on the well-being of my aging self. How did I get started? I went on-line and was referred to the local chapter. When I told the pleasant receptionist about how my shakes often caused much of my meals to end up on the floor (you know about that) and that I take a blood thinner that makes using knives a potentially bloody experience, she was happy to sign me up for Meals-on-Wheels, and my deliveries started the next day. It’s been a great help and I am most grateful to them.

Walter Ebmeyer

http://www.mealsonwheelsamerica.org/

Predicting age of onset in Familial Essential Tremor: How much does age of onset run in families?

Researchers at Columbia University, headed by Dr. Elan Louis, conducted a study of 26 families including mine (myself, a daughter & a sister) in phase one. The following is the results of the study. In the meantime, Dr. Louis & his team have moved to Yale. They are just beginning phase 2 of the study. My family will again participate in it.

Publication-Packet-Summaries

Download PDF

University of Florida Ice Pack Study

On September 22, I visited the University of Florida. I was taken on a tour of several offices on the campus.

The Movement Disorder Center there is outstanding. It takes a holistic approach to the treatment of ET that involves occupational therapy, physical therapy, etc. The facilities and staff are excellent. If you live in Florida, southern Alabama or southern Georgia, I recommend you consider taking a trip to Gainesville & going to the Center.

While speaking with several members of the staff, they told me about a study they are conducting involving use of an ice pack on the forearm. So I said that I’d like to try it. They had me draw a series of straight horizontal lines and four spirals. My tremor was very obvious, They then put the icepack on my forearm and left it for 10 minutes. After removing it, they had me repeat drawing the lines and spirals. The lines were almost completely straight, and there was a big improvement in the spirals. I was honestly amazed.

Peter

Want to try it yourself?  Here’s how.

In the line drawing test, subjects are asked to draw at least 10 lines with five of these horizontal lines touching the vertical lines at either side of the page within 20 seconds. The score on writing speed is calculated from the amount of time taken by the subject to complete the copying of one of four sentences. Writing legibility is determined by the number of illegible letters totaled in the writing sample. Letters are considered illegible if the subject omits a letter, is unable or refuses to write a letter, erases the same letter twice, or writes an unreadable letter.

The Functional Dexterity Test (FDT) is a timed measure of manual dexterity that involves turning sixteen wooden pegs over and reinserting them into the pegboard. This test was constructed over a 20-year period and the intrarater reliability has been shown to be excellent (ICC = 0.91) 16. The examiner uses a stopwatch to record the time in seconds that it takes for the patient to turn over all the pegs on the board with one hand. A 5-second penalty is added each time if the patient supinates or touches the board for assistance or if a patient drops a peg. Two scores are obtained: (1) time, in seconds, to complete the test and (2) combined total time with penalty seconds added to the initial time. If the patient exceeds 55 seconds, he or she receives a non-functional rating. The test is stopped after 2 minutes so that progress within the nonfunctional range still can be measured.

Note: If you are having trouble viewing the text below scroll to the bottom and click the + sign beside the zoom menu. Or you can download the pdf.

ETcooling-MDS-abstract-2014-final