Speech Script Rough Draft

May 20

In Kindergarten, at age 5, I was writing and while holding a pencil my hands were shaking. A parent volunteered noticed and told my mom. My mom then took me to a neurologist and at 14 and I was then diagnosed with essential tremor known as ET, which causes shaking of the hands, head, trunk, legs, or voice. This progressive movement disorder that usually starts in the 40s or 50s and can even be seen in newborns made me become that 1 in 10 million with ET. I took primidone and later Topamax, which are in the anti-seizure class. It was later that I tried anti-anxiety medicines and then denied beta blockers because of asthma. As a young adult I experimented with the idea of using wine to help take away the tremor. Unfortunately as good as the wine tastes, the bounce back effect made the tremors 10 times worse than they were to begin with. It was when I was 20 that I went onto the International Essential Tremor Foundation website essentialtremor.org and discovered that I could go to a seminar in Los Angeles at Cedar Sinai and learn about essential tremor. It was then at age 23 that I went to the IETF hosted seminar at UCSD, featuring neurologists from UCSD health system that I was able to see in person, try, and learn about technology that would help people to cope with essential tremor. Technology that I tried was the LiftWare spoon that counteracts the tremor. Later on, I learned about the Lift Pulse app that measures tremors. It was then at age 24 that on the Understanding Essential Tremor Facebook page that I discovered the new IETF information phone application. I also learned at the seminar about coping methods that included using weighted utensils to help with eating and using things like weighted pen and pencil holders. It was when I took social formations, a communication class that I started a Twitter account. It was then that I began to follow the IETF and was able then to link myself to their three Facebook pages. While on Facebook between the age of 20 and 24 I become friends with and liked 10 different essential tremor pages. 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 entered Sonoma State as a freshman music education major. I remember being in Ives Hall auditorium at Sonoma State as an 19 year old and playing the Rachmonioff Vocalise for my repertoire class. I had invited my friend Tessa, a trombone player and my friend Anna in the audience. While holding out a high F for 8 beats, I heard Tessa say, “Why is shaking? Is she Okay? It was then I realized that the judgment had begun. At that point I was always looked as being nervous. It was not till I was 20, at SSU, and had to go to the ER for my knee that a nurse said to me, “Have a little too much to drink?” because I had to hold the x-ray board on my knee in a sit up position, which induced the tremor. It was then at 24 that I wanted to learn as much as possible and although I couldn’t go to the ET Expo in Arizona, that I watched the seminar online and learned even more information about ET than when I went to the two seminars.

May 20. Addition to the first part of speech I wrote

It was on YouTube that I saw Carolina Conway’s video about essential tremor and learned that there was a support group in San Diego when I went on to the IETF website and searched support groups San Diego. It was during the Winter quarter that I went to my first support group meeting. I was the youngest one there and faced reality head on when I saw the various forms of intensity of tremor of the way that it progressed and affected people’s body parts in different ways. At first, I was nervous to go to a support group meeting because I only knew Carolina and did not know what to expect. I went to the meeting not only for myself to start making connections with others with ET, but because I took COMM and the COMMUNITY and spent a whole semester doing a group project that involved research papers and a Prezi presentation. Doing the project was the push I needed to have to go to the meeting and made it so I did not have an excuse. It was during the project that with my group that we interviewed Carolina, the support group leader for San Diego where I really wanted to shadow and train under her to start the first ever support groups in Los Angeles and Ventura counties. After the interview finished I stayed more and talked with Carolina for two hours about ideas that I had for the support group. It was there that Carolina said that I needed to work my way to becoming a co-support group leader. It was then also, that the web activity for my project was a WordPress blog that I created for people with essential tremor to have a place to support each other. This blog was the first step in proving to Carolina that I had what it took to be a support group leader. This blog and group project happened during March, which is essential tremor awareness month. The blog that I created had raised lots of awareness and reached people outside the US. My blog was posted on Facebook and Carolina’s website San Diego Essential Tremor Support Group that when I had my friends and family repost the blog link that one of my mom’s piano students mother reposted and the blog helped the mom’s friend who was just diagnosed with essential tremor. It was working on this group project for my communication class that made me realize that I have the power during awareness month to change people’s lives. 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. Being that I saw a video of deep brain stimulation surgery where a concert violinst who had ET played during surgery and then the tremors where gone after surgery made me want to the DBS surgery even more. I pictured myself as a trombonist of 16 years having the surgery and being able to play trombone again. It was just May 19 when my neurologist said that I had exhausted all options and asked me if I was interested in surgery. I said yes and realized hurdles that would need to be overcome would include the expenses, the surgery being evasive, and the stpes to be qualified as a candidate meticulous. Not to mention the risk that I have with anesthesia allergy and being sensitive to medicine.

Speech Script Rough Draft

Rachel Roth

Professor Amanda Solomon Amorao

CAT 125

28 May 2015

Ignite Speech Draft Script

Final Version of unedited speech May 21

In Kindergarten, at age 5, I was writing and while holding a pencil my hands were shaking. A parent volunteered noticed and told my mom. My mom then took me to a neurologist and at 14 and I was then diagnosed with essential tremor known as ET, which causes shaking of the hands, head, trunk, legs, or voice. This progressive movement disorder that usually starts in the 40s or 50s and can even be seen in newborns made me become that 1 in 10 million with ET. I took Primidone and later Topamax, which are in the anti-seizure class. It was later that I tried anti-anxiety medicines and then denied beta blockers because of asthma. As a young adult I experimented with the idea of using wine to help take away the tremor. Unfortunately as good as the wine tastes, the bounce back effect made the tremors 10 times worse than they were to begin with. It was when I was 20 that I went onto the International Essential Tremor Foundation website essentialtremor.org and discovered that I could go to a seminar in Los Angeles at Cedar Sinai and learn about essential tremor. It was then at age 23 that I went to the IETF hosted seminar at UCSD, featuring neurologists from UCSD health system that I was able to see in person, try, and learn about technology that would help people to cope with essential tremor. Technology that I tried was the LiftWare spoon that counteracts the tremor. Later on, I learned about the Lift Pulse app that measures tremors. It was then at age 24 that on the Understanding Essential Tremor Facebook page that I discovered the new IETF information phone application. I also learned at the seminar about coping methods that included using weighted utensils to help with eating and using things like weighted pen and pencil holders. It was when I took social formations, a communication class that I started a Twitter account. It was then that I began to follow the IETF and was able then to link myself to their three Facebook pages. While on Facebook between the age of 20 and 24 I become friends with and liked 10 different essential tremor pages. 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 entered Sonoma State as a freshman music education major. I remember being in Ives Hall auditorium at Sonoma State as an 19 year old and playing the Rachmaninoff Vocalise for my repertoire class. I had invited my friend Tessa, a trombone player and my friend Anna in the audience. While holding out a high F for 8 beats, I heard Tessa say, “Why is shaking? Is she Okay? It was then I realized that the judgment had begun. At that point I was always looked as being nervous. It was not till I was 20, at SSU, and had to go to the ER for my knee that a nurse said to me, “Have a little too much to drink?” because I had to hold the x-ray board on my knee in a sit up position, which induced the tremor. It was then at 24 that I wanted to learn as much as possible and although I couldn’t go to the ET Expo in Arizona, that I watched the seminar online and learned even more information about ET than when I went to the two seminars. It was on YouTube that I saw Carolina Conway’s video about essential tremor and learned that there was a support group in San Diego when I went on to the IETF website and searched support groups San Diego. It was during the Winter quarter that I went to my first support group meeting. I was the youngest one there and faced reality head on when I saw the various forms of intensity of tremor of the way that it progressed and affected people’s body parts in different ways. At first, I was nervous to go to a support group meeting because I only knew Carolina and did not know what to expect. I went to the meeting not only for myself to start making connections with others with ET, but because I took COMM and the COMMUNITY and spent a whole semester doing a group project that involved research papers and a Prezi presentation. Doing the project was the push I needed to have to go to the meeting and made it so I did not have an excuse. It was during the project that with my group that we interviewed Carolina, the support group leader for San Diego where I really wanted to shadow and train under her to start the first ever support groups in Los Angeles and Ventura counties. After the interview finished I stayed more and talked with Carolina for two hours about ideas that I had for the support group. It was there that Carolina said that I needed to work my way to becoming a co-support group leader. It was then also, that the web activity for my project was a WordPress blog that I created for people with essential tremor to have a place to support each other. This blog was the first step in proving to Carolina that I had what it took to be a support group leader. This blog and group project happened during March, which is essential tremor awareness month. The blog that I created had raised lots of awareness and reached people outside the US. My blog was posted on Facebook and Carolina’s website San Diego Essential Tremor Support Group that when I had my friends and family repost the blog link that one of my mom’s piano students mother reposted and the blog helped the mom’s friend who was just diagnosed with essential tremor. It was working on this group project for my communication class that made me realize that I have the power during awareness month to change people’s lives. 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. Being that I saw a video of deep brain stimulation surgery where a concert violinist who had ET played during surgery and then the tremors where gone after surgery made me want to the DBS surgery even more. I pictured myself as a trombonist of 16 years having the surgery and being able to play trombone again. It was just May 19 when my neurologist said that I had exhausted all options and asked me if I was interested in surgery. I said yes and realized hurdles that would need to be overcome would include the expenses, the surgery being evasive, and the steps to be qualified as a candidate meticulous. Not to mention the risk that I have with anesthesia allergy and being sensitive to medicine. It is now in the present at 24 that my dreams of becoming a support group leader are coming true. Over the summer I am doing an internship for the International Essential Tremor Foundation with Carolina and the San Diego essential tremor support group. This internship will allow me to shadow Carolina while I plan an event, send out emails to neurologist, neurosurgeons, physical therapists, and occupational therapist and asking them to be guest speakers at meetings. It all started with me not knowing that I had essential tremor till a parent volunteer noticed my hands shaking and told my mom. If not for that volunteer I would not be diagnosed and would not have known the potential that I have to raise awareness and educate people about essential tremor.

Works Cited

"Archimedes Spiral." A Tremulous Life. 28 Aug. 2013. Web. 17 May 2015. <https://atremulouslife.wordpress.com/2013/08/28/archimedes-spiral/>.

"Awareness Tools." IETF. 2015. Web. 16 May 2015. <http://www.essentialtremor.org/wp-content/uploads/2015/01/Awareness-Wallpaper-2.jpg>.

"Awareness Tools." IETF. 2015. Web. 16 May 2015. <http://www.essentialtremor.org/wp-content/uploads/2015/04/General-IETF-Twitter-Cover.jpg>.

"Bob Delf, Northwest Cellars | IETF." IETF. Web. 16 May 2015. <http://www.essentialtremor.org/bob-delf/>.

Broderick, Ryan. "A World-Class Musician Was Asked To Play Violin During His Own Brain Surgery." BuzzFeed. 15 Aug. 2014. Web. 16 May 2015. <http://www.buzzfeed.com/ryanhatesthis/violinsane-in-the-membrane#.qrK9XW9zB>.

Brody, Jane. "Finding Some Calm After Living With ‘the Shakes’." The New York Times. The New York Times, 28 May 2007. Web. 16 May 2015. <http://www.nytimes.com/2007/05/29/health/29brod.html?_r=0>.

Conway, Carolina. "Meetings." - San Diego Essential Tremor. Web. 17 May 2015. <http://sandiegoessentialtremor.weebly.com/meetings.html>.

"ElderStore." KEatlery Weighted Dining Utensils -. Web. 17 May 2015. <http://www.elderstore.net/keatlery.aspx>.

"Elderstore.com." Weighted Universal Holder for Pens and Pencils -. Web. 17 May 2015. <http://www.elderstore.com/weighted-universal-holder-for-pens-and-pencils.aspx>.

"Essential Tremor Awareness | Bingham Memorial Hospital." Bingham Memorial Hospital. 30 Mar. 2012. Web. 17 May 2015. <https://www.binghammemorial.org/blog/2012/03/30/essential-tremor-awareness/>.

"ET Awareness Month Walk Tools | IETF." IETF. Web. 17 May 2015. <http://www.essentialtremor.org/walktools/>.

"Facebook Search." Facebook Search. Web. 16 May 2015. <https://www.facebook.com/search/str/essential+tremor/keywords_top>.

"Facebook Search." Facebook Search. Web. 16 May 2015. <https://www.facebook.com/search/str/essential+tremor/keywords_users>.

"Facebook Search." Facebook Search. Web. 16 May 2015. <https://www.facebook.com/search/str/essential+tremor/keywords_pages>.

"Facebook Search." Facebook Search. Web. 16 May 2015. <https://www.facebook.com/search/str/essential+tremor/keywords_groups>.

"Facebook Logo." Facebook. Web. 16 May 2015. <https://www.facebook.com/groups/487763604686756/>.

"Facebook Logo (IETF Understanding Essential Tremor Facebook Page)." Timeline Photos. 17 May 2015. Web. 18 May 2015. <https://www.facebook.com/photo.php?fbid=10206490159988572&set=a.4739588243445.339064.1107071717&type=1&theater>.

"Facebook Logo (IETF Understanding Essential Tremor Facebook Page)." Timeline Photos. 18 May 2015. Web. 19 May 2015. <https://www.facebook.com/photo.php?fbid=10206498218750036&set=a.4739588243445.339064.1107071717&type=1&theater>.

“Flickr.” Yahoo!, 1 June 2014. Web. 17 May 2015. <https://www.flickr.com/photos/essentialtremor/14741773515/in/album-72157645505401269/>.

“Flickr.” Yahoo!, 1 June 2014. Web. 17 May 2015. <https://www.flickr.com/photos/essentialtremor/14761634983/in/album-72157645505401269/>.

Gibson, Jordan. "Facebook: Photos of You." Facebook. 13 June 2009. Web. 17 May 2015. <https://scontent-sjc.xx.fbcdn.net/hphotos-xat1/v/t1.0-9/10400138_657982840041_6711936_n.jpg?oh=a32bab7d7e1232d4f46a74e9311edb0a&oe=55D24FAD>.

"Greater Birth Defects of Unborn Children to Women Taking Topamax." Defective Drug Lawsuit. 15 Apr. 2013. Web. 16 May 2015. <http://defectivedruglawsuit.net/2013/04/greater-birth-defects-unborn-children-women-topamax>.

"Hardware/ Software." Pinnacle Office Solutions Ltd. Web. 17 May 2015. <http://www.pinnaclenetworks.ca/?page_id=98>.

"Health Ignite V2." Eventbrite. Web. 17 May 2015. <http://www.eventbrite.com/e/health-ignite-v2-tickets-12079521173>.

"International Essential Tremor Foundation to Host First-ever Essential." PRWeb. 20 Jan. 2015. Web. 17 May 2015. <http://www.prweb.com/releases/2015/01/prweb12451339.htm>.

"International Essential Tremor Foundation - Google." International Essential Tremor Foundation - Google. Web. 16 May 2015. <https://plus.google.com/115981727297229770392/posts>.

"International Essential Tremor Foundation - Twitter." International Essential Tremor Foundation - Twitter. 1 June 2009. Web. 16 May 2015. <https://twitter.com/essentialtremor>.

"IETF." YouTube. YouTube. Web. 17 May 2015. <https://www.youtube.com/user/EssentialTremorIETF>.

"LIFT WARE - Reviews & Brand Information - Google Inc. Mountain View, CA - Serial Number: 86276985." LIFT WARE - Reviews & Brand Information - Google Inc. Mountain View, CA - Serial Number: 86276985. Web. 16 May 2015. <http://www.trademarkia.com/lift-ware-86276985.html>.

Rice, Catherine. "Tremor Talk Issue 14." Tremor Talk For Members of the International Essential Tremor Foundation. International Essential Tremor Foundation, 1 Apr. 2014. Web. 18 May 2015. <http://www.essentialtremor.org/wp-content/uploads/2014/05/TremorTalkApril2014FINAL.pdf>.

"Tremor Gram Archive 2014 | IETF." IETF. Web. 17 May 2015. <http://www.essentialtremor.org/about-et/publications-library/tremor-gram-archive-2014/>.

"Tremor Talk." Tremor Talk. Web. 17 May 2015. <http://tremortalk.org/>.

Web. 16 May 2015. <http://www.uhealth-nz.com/images/pulse_banner.png>.

Web. 17 May 2015. <http://www.essentialtremor.org/wp-content/uploads/2014/01/WebsiteHeader_TremorTalk_General_Web.jpg>.

"手が震えてしまう人向けに開発されたアクティブ制震システム付きスプーン「Liftware」." Daily News Agency. 19 Jan. 2014. Web. 16 May 2015. <http://dailynewsagency.com/2014/01/19/spoon-uses-camera-stabilizing-technology-drg/>.

May 25

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.

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

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

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

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.

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.

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.

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

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

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.

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.

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

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.

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

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.

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.

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.

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.

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

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.

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

I did not hesitate and said yes.

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.

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.

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.

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.

Rachel Roth

Professor Amanda Solomon Amorao

CAT 125

28 May 2015

Final Version of Ignite Speech