Leg Tremor

One of our readers Laura recently posted about essential tremor affecting her legs. ET can affect all limbs including legs as well as the more common shaking in the hands.

You can read more about leg tremor in an article “Leg Tremors versus Restless Legs Syndrome” by Dr. Joseph Jankovic, a member of the IETF’s Medical Advisory Board.

He writes:

ET chiefly involves the hands, but may also involve the head, voice and other body parts, including the legs. In our series of 350 ET patients, 13.7% had involvement of the legs.

To learn more, read the full article here.

Resources
For more facts about ET including information on head tremor, visit the IETF website.

Essential Tremor, Parkinson’s disease, and DaTscan

Ronald M. Schwartz, MD, of the Neurological Research Center at Hattiesburg Clinic, MS recently gave an interview about the DaTscan test, an imaging agent that was approved by the FDA. The DaTscan is a nuclear medicine test that enables doctors to differentiate between Parkinsonian syndromes and essential tremors.

This video is posted on our website – Essential Tremor in the News.

DaTscan is the first FDA-approved diagnostic imaging agent to help physicians evaluate neurodegenerative movement disorders, such as idiopathic (of unknown cause) Parkinson’s disease (PD). This agent may be used in conjunction with other diagnostic evaluations to help differentiate essential tremor (an involuntary shaking of the hands, head, and voice) from tremor due to PS. DaTscan cannot differentiate between the different types of PS.

Learn more about DaTscan’s use as a diagnostic tool.

Chicago Bound Round 2

Dr. Dalvi and the ET patients from the Tinley Park area were together again last Saturday at the Holiday Inn and Convention Center. We had a group of about 30 people and everyone learned a great deal with comments like, “I learned more in the last hour and I have in the 30 years I have had ET” and “definitely worth while”. But the conversation I had with a local police officer who had essential tremor was shocking. He told me a story of how his local neurologist couldn’t find test results to support his essential tremor so basically accused him of faking it and not wanting to go to work. For those that aren’t aware, there are no medical tests that exist to confirm the diagnosis of ET. It is diagnosed by medical history and neurological evaluation. To read more about ET go to our website.

Dr. Dalvi was joined by Dr. Peter Warnke, Associate Professor of Surgery and Neurology and Director of the Stereotactic and Functional Neurosurgery Program at the University of Chicago to answer questions about deep brain stimulation for essential tremor.

We also took the opportunity to show the audience a draft copy of the upcoming ET video developed to create ET Awareness. The attendees were in agreement the video is badly needed and gave praise at how well it was done. Check out the making of the video. Our “stars” had so much fun!

The final version should be live on our website sometime next week.

This week I am Phoenix bound. Can’t wait to see all the folks in Phoenix!

Chicago Bound

What a great time we had at the ET Seminar on Saturday, October 6 in Northbrook, Il. Dr. Dalvi was terrific and gave the attendees loads of information about the diagnosis process, treatment options, and updates on DaTscan.

DaTscan is a radioactive drug that is injected into your bloodstream to help take pictures of areas of your brain using a special camera. Your doctor may decide to do this imaging test using DaTscan contrast along with other medical tests to help decide if your movement difficulties are due to a parkinsonian syndrome (PS) or essential tremor.

Research updates were also provided on Focused Ultrasound as well as other studies being conducted across the country.

I stayed after the event and visited at length with several people. I net new support group members as well as spoke to members I have known for years. The group is led by Gladys Keats who has led the group for 15 years. She provides a place for so many to call “home” during the meetings. A place where no one is judged and everyone understands the impact that essential tremor has on each group member. Gladys is such a warm and engaging person and I have personally been privileged to have work with her over the years. Gladys told me she thinks about retiring as leader but said every time she mentions it, someone in the group tells her how much they need her so she agrees to stay on another year. Thank you Gladys for being such an inspiration to all of us!

I also want to recognize Howard Mirsky, my dear friend who has provided so much support as co-leader  for many years as well as an ardent advocate for the IETF. Thank you Howard for all your hard work and for bringing important topics of conversation to the group.

I also met a special couple who has a 22 year old son, Danny, who was diagnosed with ET. They told me how much the seminar helped them understand ET and the information that was presented was priceless. Many others told me how appreciative they were and they wanted to hold another seminar next year. The results always remind me how many people are affected and how much these seminars help them. It makes all the hard work worthwhile.

The ET Seminar was filmed and will be available on the website, YouTube and on webcast sometime in November. Watch your email for a Tremor Gram announcement. Tremor Gram is our free online electronic newsletter so get signed up now.

Future ET Seminars between now and Thanksgiving will be held in the following cities, Tinley Park, Il; Fort Myers, FL; Tacoma/Seattle, WA; Dallas, TX and Downey, CA. The seminars are free so register now before it’s too late.

National Gerontological Nursing Association

On October 4th and 5th, I represented the IETF at the National Gerontological Nursing Association annual convention in Baltimore, MD. What a great experience!

Approximately 250 nurses attended and I think I spoke to all of them! They were warm, caring and anxious to give their patients the best care and understanding they can. They shared stories, asked questions and snatched up printed materials like our patient brochure, surgical brochure, essential tremor vs. Parkinson’s disease (ET vs. PD) flyer.

Nearly all of them work with essential tremor patients; some nurses have ET themselves and some have family members or friends with ET. Some also teach in nursing schools.  However, none were aware that the IETF existed. They were so happy to know there is a resource  to access the latest information to help them care for their patients and to educate student nurses.

Another plus was an invitation from a nurse from Oklahoma  to attend their meeting in April 2013.  She said, “This is so important!” I am looking forward to getting to know this group of caregivers.

One of the most rewarding things about my job is getting out to visit with nurses, physician assistants, nurse practitioners and primary care physicians.  They truly care about their patients!

If you or someone you know has ET and you would like to receive an information packet, then request one on our website or call 888.387.3667.

 

 

 

The Mysteries of the Mind

Mind Body MedicineI watched a program on The Science Channel the other night: Through the Wormhole: Mysteries of the Subconscious. Part of the program discussed the work being done at The Benson-Henry Institute of Mind Body Medicine at Massachusetts General Hospital. With more than 35 years of research and clinical practice, Herbert Benson, MD and his colleagues at the Institute have proven the effectiveness of mind/body medicine in helping thousands of men and women reduce the stress that can cause or exacerbate their medical conditions. And as any ET patient will tell you, stress and anxiety do exacerbate essential tremor.

Mind/body medicine takes into account that physical health is influenced by thoughts, feelings, and behaviors, and conversely, thoughts, feelings, and behaviors can be influenced by physical symptoms. It teaches individuals how to take control of their lives, use their own power to reduce stress and other negative behaviors and thoughts, and thus maintain or regain health.

Dr. Benson found that there is a counter-mechanism to stress which he calls the “relaxation response.” The relaxation response is a physical state of deep rest that changes ?normal? physical and emotional responses to stress (e.g., decreases in heart rate, blood pressure, rate of breathing, and muscle tension). If practiced regularly, it can have lasting effects.

For more information on how to elicit the relaxation response in you, visit The Benson-Henry Institute of Mind Body Medicine website for the basics.

Do you meditate? What technique works for you? What other strategies or Coping Tips do you use to manage stress and anxiety?

August-September ET Report from Washington, DC

From Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation

September excerpt:  Through the efforts of the IETF, the number of cosponsors of the National Neurological Diseases Surveillance System Act of 2011 (HR 2595) has climbed to 87, up from 84 last month. Read more…

August excerpt:  At Cathy Rice’s request, I contacted members of the Idaho congressional delegation to bring to their attention the Spring-Summer issue of Tremor Talk. The feature story reported efforts by high school students in Boise to engineer better tools to help those with essential tremor improve their communication skills. Read more…

Welcome to the IETF’s New Tremor Talk Blog

The IETF is excited to debut our new blog which will be a companion site to the main website, essentialtremor.org.

IETF office staff will post brief entries, links to news of note, photos, and other conversation pieces on this site to help keep you informed of the latest happenings at essentialtremor.org and elsewhere.

Bear with us as this blog develops into a direct way to interact with you, be it someone with ET, friends and loved ones, or a health care professional.

The blog is yet another way for the IETF to be “Your Voice for Essential Tremor.”