Month: August 2016

Peter’s MRI Focused Ultrasound Journey (Update)

On August 12th, I participated in a conference call with Susan Klees, Director of Communications for the FUS Foundation, and Bill Reifenberger of Silverthorn Films.  The purpose of the call was to set a time and date for Bill and his team to interview and film me prior to the August 24th procedure.

Consequently, Bill and his team came to my house on August 15th and spent most of the day.  Bill did the directing and interviewing, while Kai Crowe-Getty did all the filming.  I felt all the questions that Bill asked were relevant and encompassing.

They then filmed me doing various things – sticking both hands out, writing a couple of sentences, dialing a cell phone, making and drinking a cup of tea, using a key to lock and unlock a door, and walking outdoors. Throughout the day they were professional and friendly.

Peter

Peter’s MRI Focused Ultrasound Journey

On August 2, I went to the University of Maryland Medical Center hospital to undergo a number of preliminary steps prior to the procedure on August 24th. First I met with Charlene Aldrich, RN, MSN. She is the Clinical Research Manager. I consider her my friend as she has done many things to help HopeNET. She explained to me in detail what would occur on August 24th. I then had a standard Essential Tremor examination by the neurologist, Paul Fishman, MD, PhD. Charlene videoed the process. I did spirals, wrote a sentence, poured water from one cup to another, extended my arms, and did touching. Dr. Fishman checked my legs. I concluded the examination by walking up and down the corridor outside the room. I finished by walking toe to heel with Dr. Fishman’s assistance. I then had a CT scan followed by a blood test. As I related in an earlier post I am claustrophobic and therefore have difficulty in a MRI. Charlene gave me medication that worked very well in calming my nerves. The MRI lasted about an hour. For the first 40 minutes, I could listen to music. For the last 20 I couldn’t, but it didn’t matter. My day ended with meeting with the neurosurgeon, Howard Eisenberg, MD along with Charlene. We had a relaxed conversation. As he was once a Navy doctor, we were able to commiserate about our naval service.

On August 5th, I returned to the hospital. I spent 2 hours speaking to Lisa Clough and Karen Warmkessel from the hospital’s Communications & Public Affairs Office. Last month, the FDA approved the MRI Focused Ultrasound procedure for Essential Tremor. On August 24th, the New England Journal of Medicine is publishing an article on the procedure in its latest edition. Simultaneously, the Focused Ultrasound Foundation, based in Charlottesville, Virginia is having a press conference. I will be part of this as I will be videoed throughout my procedure as well as being interviewed before and after. I spent the two hours on the 5th describing in some detail my experience with ET as well as explaining HopeNET’s role in advocating for those with ET. They in turn explained to me what they were going to do.

I will be at the hospital at 9am on the 24th and then it all starts.

Peter

Join Us for Essential Tremor Support Group Meetings This Week!

support-group-clipart-2Plus Sign-Up NOW to be an ET Study Participant

The topic of this week’s Silver Spring and Columbia, Maryland meetings will be coping with essential tremor. People will have an opportunity to share what has worked for them. Discussion will also be on current sign-ups for a Tai Chi class that is part of a bigger essential tremor study that is getting ready to start. Interested participants do not need to attend the support group meeting but will need to meet next week with Dr. Sean Vasaitis who, in addition to being a pharmacologist at University of Maryland Eastern Shore, has a background in alternative medical approaches, essential tremor, and is a Tai Chi instructor.

The study will look at whether or not Tai Chi helps to alleviate ET symptoms. It consists of a Tai Chi class that will meet once a week for approximately 4-6 months at Leisure World in Silver Spring, MD. If you are interested in participating, Dr. Vasaitis is currently setting up times to meet with people individually at Leisure World the week of August 8-12th to do baseline screenings. Please contact him at tsvasaitis@umes.edu with your preferred screening date/time and put ET Tai Chi Study in the subject line. This study is open to all with essential tremor.

The Silver Spring, Maryland support group meets this Thursday morning (the first Thursday of each month) August 4th at 10:30 am at Leisure World’s ClubHouse I. Directions: Enter off of Georgia Avenue at the globe sculpture (between Bel-Pre Rd and Norbeck Rd). At the stop sign you’ll see ClubHouse I in front of you. Turn left onto Leisure World Blvd and turn right immediately into parking lot.

The Columbia, Maryland support group meets this Friday morning (the first Friday of each month) August 5th at 10am at The Wellness Center. Address: 10710 Charter Dr. Ste 100, Columbia, MD 21044.

See you there!