About NSTA - National Spasmodic Torticollis Association

Seattle, Washington Support Group (New Group)

18 Aug

Dear Friends of the NSTA,

I had the pleasure of speaking with Judy Yoon from Seattle, WA on the phone last week. She is a pleasant and enthusiastic woman who was recently diagnosed with Spasmodic Torticollis/Cervical Dystonia. Judy has started a support group in Seattle and would like everyone in the area to know about it. She has contacted several dystonia organizations to get the word out. The following is a information on on Judy and her up coming support group meetings.

Justin, NSTA


 

I would like to take this opportunity to introduce myself, as well as all new Dystonia People to the Seattle Dystonia Support group, which is growing exponentially, thanks to our great Washington state dystonia support group leaders, Denise Gibson of Spokane, Karen, of the Spasmodic Dysphonia group and Jen Dolan of Olympia for letting the dystonia community know that we now have a new Seattle area group!

My contact details are listed on the DMRF website and is added to the NSTA website:

Seattle, WA Dystonia Support Group

Judy Yoon
Seattle, WA
judyhyoon@gmail.com
202-288-9630

ABOUT ME:

I grew up in Washington state, went to UW, and left to go to the “other” Washington, D.C. It has been over 10 years since I’ve been back, but I have always considered Washington state “home”, as my mother still lives in the same house I grew up in (Edmonds).

Last year, I came back to visit, and I started experiencing stiff neck pain, and other symptoms that led me to 4 ER visits spanning over several months. In December of 2014, I was finally diagnosed with Cervical Dystonia at EvergreenHealth Hospital in Kirkland. As soon as I was diagnosed, the first thing I did was looked online to try to find a support group to talk to someone about my diagnosis and to process “What the Doctor said…You have Cervical Dystonia – Spasmodic Torticollis”. Not knowing what “Cervical Dystonia – Spasmodic Torticollis” was, and all the pain and terrifying, involuntary movements my body was experiencing, I thought I was given a “death sentence” and permanently left to become “disabled”. Jen Dolan and Denise Gibson both answered my phone call that day, and I cried. Having someone on the phone to listen and talk to, reassured me I was not alone!

After seeking different opinions, trying various alternative treatments, and in denial about my diagnosis, I finally decided to have Botox injections in March 2015. I was opposed to it at first, BUT, I am grateful today for those injections, as it has diminished my pain, given back some range of motion in my neck, and allowed me to start doing normal activities again–such as walking, light exercise, and more importantly, energy to form a new support group. :)

After being bed-bound and house-bound for 6 months, I decided I didn’t want dystonia to “defeat me”, and wanted to generate and rally enough support to have the courage to start rebuilding a new life and learn “How to live with chronic pain and dystonia”. I couldn’t find a local support group, and Olympia and Spokane were too far of a drive from Edmonds, so I contacted the DMRF and decided to have myself listed as the contact for Seattle, just so that I could meet others. We had an informal get-together a few weeks ago, where we were able to connect, share and just talk. It was awesome! Given a renewed quality of life, and learning to appreciate what I have experienced and learned so far, I am confident that despite the uncertainties that lie ahead for all of us surrounding our condition and life, we CAN and WILL improve the quality of our lives together!

Judy


 

MARK YOUR CALENDARS!

****SEPTEMBER 12TH (SATURDAY)****
Time: 11-1PM
Location: EvergreenHealth Hospital
Address: 12040 128th St NE
Kirkland, WA 98034
Room: RED-551 (Auditorium)
Website: http://www.evergreenhealth.com/evergreenhealth-medical-center-silver-entrance

Parking: FREE – Off street parking, or EvergreenHealth Hospital Parking Garage, Silver Entrance
(Best entrance, off of 130th Lane, next to Emergency Room entrance, and proceed through Emergency Room building to Auditorium)

*Guest Speakers:
Dr. Alida Griffith, MD (Neurologist, EvergreenHealth Hospital, Booth Gardner Parkinson’s Care Center

Dr. Brad Lichenstein, ND, BCB – “Biofeedback”

http://www.thebreathspace.com/#!video/c1wd5

*Sponsored by: Medtronics


****OCTOBER 24TH (SATURDAY)****
Time: 12-2PM
Location: EvergreenHealth Hospital
Address: 12040 128th St NE
Kirkland, WA 98034
Room: RED-551 (Auditorium)
Website: http://www.evergreenhealth.com/evergreenhealth-medical-center-silver-entrance

Parking: FREE – Off street parking, or EvergreenHealth Hospital Parking Garage, Silver Entrance
(Best entrance, off of 130th Lane, next to Emergency Room entrance, and proceed through Emergency Room building to Auditorium)

*Guest Speaker
Dr. Patrick Hogan

http://www.psneurology.com/

*Sponsored by: Myobloc Pharmaceutical
Lunch/Food Provided


****NOVEMBER 14 (SATURDAY)****

Time: 12-2pm
Location: EvergreenHealth Hospital
Address: 12040 128th St NE
Kirkland, WA 98034
Room: RED-551 (Auditorium)
Website: http://www.evergreenhealth.com/evergreenhealth-medical-center-silver-entrance
Parking: FREE – Off street parking, or EvergreenHealth Hospital Parking Garage, Silver Entrance
(Best entrance, off of 130th Lane, next to Emergency Room entrance, and proceed through Emergency Room building to Auditorium)
*Guest Speaker:
Dr. Jake Felice, ND “Holistic Solutions to Chronic Pain”

http://www.drjakefelice.com/bio/

*Sponsored by Merz Pharmaceutical