Version 7 May 26. Matched to Power Point Slides

(1)When I was 5, I had trouble writing, while I was struggling to a hold a pencil my hands were shaking.

A parent volunteered noticed this and pointed it out to my mom.

(2)My mom then took me to a neurologist and at 14 I was diagnosed with essential tremor known as ET, (3)which causes shaking of the hands, head, trunk, legs, or voice.  

(4)This is a progressive movement disorder that usually starts in the 40s or 50s and can even be seen in newborns.

(5)Approximately 1 in 10 million people has ET. I am one in ten million. 

(6) I took Primidone and later Topamax, which are in the anti-seizure class of medication.

I was not allowed to try beta blockers because of asthma.

(7)When I was 21 I experimented with drinking wine to  diminish the tremor, but the next day the bounce back affect made the tremor 10 times worse.

(8)When I was 20 I went to a seminar hosted by the International Essential Tremor Foundation at Cedar Sinai and learned more about essential tremor.

(8)When I was 23, I went to a seminar hosted by the IETF right here at UCSD, featuring neurologists from UCSD health system.

(9)The seminar allowed me to try the LiftWare spoon and learn about technology that would help me (10)cope with essential tremor.

(11)When I took a communication class that required me to create a Twitter account, I followed the IETF and then linked myself on Facebook to 10 different Facebook pages including a young adult essential tremor page.

(12)As ET is a progressive disorder, I never let it stop me from playing trombone, despite the fact that the shaking became worse as I was a freshman music education major.

(12) I remember when I was19 years old, I was playing a classical music piece for my repertoire class.

(12) My friends, both trombone players, noticed me shaking during the piece when I was holding out a high F for 8 beats that I heard one of them say, “Why is she shaking? Is she Okay?”

It was then I realized that the judgment had begun.

At that point I was always looked at as being nervous.

 It was when I was 20 , that I had to go to the ER for my knee that a nurse said to me, “Have a little too much to drink?”

The shaking was relentless because I had to hold the x-ray board on top my knee while in a sit up position, inducing the tremor.

(13)After changing from music education to communication, I wanted to learn as much as possible and viewed the (14) ET Expo from Arizona online.

(15)It was after going to the IETF seminar at UCSD that I looked up Carolina Conway and found videos of her on YouTube and discovered from her website, San Diego Essential Tremor that she was a support group leader in San Diego. 

When I went to my first support group meeting I realized I was the youngest one there other than Carolina ,who is one year older than me.

The reality set in when I saw the various intensities of tremor and the way the tremor affects each person differently.

(16) I went to the meeting not only to start making connections with others with ET, but because I wanted to use the experience to make my communication class group project represent the ET community accurately. 

During the project, my group interviewed Carolina.

After, I stayed for two hours and talked to Carolina about ideas that I had to make the support group better.

The meeting for my project woke up a desire in me to want to shadow and train under Carolina so that I could start an essential tremor support group in LA and Ventura County.

The web project for my COMM class required my group to make the blog Shake It Up which became an arena for people with ET to gain support.

(17)It was during Essential Tremor Awareness Month in March that the blog not only raised awareness, but helped one of my moms friends who at the time was just diagnosed with ET.

This blog was the first step in proving to Carolina that I had what it took to be a support group leader.

It was working on this group project for my communication class when I realized that I have the power to change people’s lives.

(18)It was the turning point where I said I will do whatever it takes to make my dreams of becoming a support group leader come true.

 (19)On Facebook, I saw a video of a concert violinist who had deep brain stimulation while playing violin.

(19)I instantly pictured myself having the DBS surgery and having an end result where after 16 years of struggling to play trombone that I could play seamlessly again.

(19) It was last week that my neurologist said that I had exhausted all options and asked me if I was interested in surgery.

(19)I did not hesitate and said yes.

 (19)I knew the hurdles that I would need to overcome would include the expense, the surgery being evasive, and the steps to qualify as a candidate.

(20) Now at 24, my dreams of becoming a support group leader are coming true as I am doing an internship with the IETF under Carolina and the San Diego ET support group.

(20)This internship will allow me to plan an event to raise awareness as well as to send out emails to bring guest doctors to each meeting.

(20) If not for that volunteer I would not be diagnosed when I was and would not have known the potential that I have to raise awareness and educate people about essential tremor.