Downey CA ET Patient Seminar

Rancho Los Amigos National Rehab CtrCome join me in Downey, CA on Saturday, February 2, 2013 where I will be working with Drs. Hui and Liker to bring you another free seminar to learn more about the diagnosis process and treatment for essential tremor. The last event in the area was cancelled because registrations were too low, but we are hoping that the timing of this event will be better for everyone, so get registered today! I look forward to meeting so many of you.

Both physicians are extremely knowledgeable and you will definitely learn a lot. It’s also an opportunity for you to receive free educational materials and get a chance to ask questions. Please join me and others with ET for a half day of education and some free refreshments.  Please register today!

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.