Saturday, June 24, 2017

Toronto Workshop for Cervical Dystonia with Dr. Farias-Follow up post...

Working with Dr. Farias was an amazing four days. I am working on a testimonial for his website but it may be five pages long! There was so much information given in so little time that it took me a few weeks to organize my notes and get into a new routine. I urge anyone with dystonia to see Dr. Farias and participate in one of his workshops. Having the understanding of why your body is dystonic is very healing. I wish the workshop had been 5 days long. I feel like there is so much more to learn and experience.

His workshop has been the most helpful and enlightening experience so far on my journey with dystonia. I finally felt like someone had all of the answers to my questions and I did not even have to ask. His passion, compassion and enthusiasm was contagious. He sent a lot of us home with more hope and determination to push ourselves harder- physically and emotionally. We will all get stronger by facing our fears-and there are many. I am overwhelmed, yet excited to start this next chapter in my journey and feel so grateful that I was able to work with Dr. Farias and the other participants in the group.  I have some videos that I took during the workshop but I do not want share them because other members of the group are in them and I do not want to post without their permission.

Since I was at the peak of my Botox when I was there it was easier for me to do some of the movements so that made it feel more exciting. I am not sure how I would have felt going to this workshop without the aid of the Botox and feeling stuck. I remember the frustration of trying to do exercises battling the pulling and the pain. It would have been easy to give up. Botox is not for everyone and trust me, I had a horrible experience with it. It took me a year and a half to try it again. I am so glad that I did. It has given me the ability to do the therapy with greater ease and less frustration. I am able to get out more. I was able to see some of Toronto without feeling like I wanted to lay down all day. I am able to hold my son without as much pain. It has given me a little bit of "normal" back.

I highly recommend his E-books available for download on his website.



It has been two weeks now since my return and the exercises and techniques he shared are wreaking physical and emotional havoc on my body. He said this was to be expected so I am trying to go with the flow and let it happen.

Wednesday, May 31, 2017

Four more days until Toronto with Dr. Joaquin Farias

In my never-ending quest to get better and have a greater sense of normalcy in my life I am going to Toronto, Canada next week to see Dr. Joaquin Farias. Dr. Farias is a world-renowned specialist in the treatment of all types of dystonia using movements to heal the body. He holds workshops for several types of dystonia and am I excited to meet the other people who will be attending. He said the groups usually range from 8-10 people. I am hopeful that he can help me manage my symptoms along with the combined efforts of all of my other doctors. 

My primary goal is to avoid Deep Brain Stimulation surgery. I have seen how amazing this surgery works for some people and for others it has not. If it comes down to being my last option I will definitely try it. In the meantime I am at week 6 of my Botox injections and have been able to do a little more activity with rest in between. Walking my son to the park and watching him play is like a dream come true. The Botox is like a mean trick. It fools you into thinking you are getting better, but it is just a temporary reprieve from the insane pulling and twisting of the dystonic muscles. It has still been a HUGE help in making my days a bit more bearable and giving me the ability to do my therapies with much more ease and range of motion. I do not think of suicide as often as I used to. I feel a bit more hopeful. I have smiled. Not the usual "putting on a good face" smile, but really smiled and felt truly happy for the first time in over 3 years. It is fleeting but I'll take it and hope that it blossoms into better days ahead.

I also had my disability hearing last week. That was the most physically and emotionally draining thing I have done in a long time. The reality of accepting that I am unable to work or drive a car along with everything else I used to do was tough. I knew it was coming. Being under scrutiny and people questioning if your condition is "real". It's freaking real all right. It's the hardest job I have ever had.  I work so hard every day in the hopes that I may be able to enjoy all the activities my family and I used to share. Snow Skiing, Frisbee, Swimming, hikes (you get the picture...I was active). 

My beautiful family. 

(And Botox at it's peak-Head straight!)

Tuesday, May 16, 2017

Sometimes it's not all about me...

Jason Dunn Story. He is SUPERMAN!

Jason Dunn occupation, retired playa. my girlfriend settled me down. at least for now haha. I was diagnosed at age 6. I have generalized dystonia. I’ve had Deep Brain Stimulation Surgery 5 times, my first DBS Surgery was in 2000 and I was his first dystonia patient after about a year with no results he thought he didn’t get the electrodes in the right spot so he tried moving them 4 times between 2000 and 2004 I think. the only Doctor that has helped a little was Dr. Vitek. I went to see him in 2008. I wish I could still go see him, but he moved to Minnesota. He wasn’t going to give up like my past two doctors. I’m going to go see a new Doctor December 18th. I definitely have good and bad days. one of my best friends i met through the DMRF has to be Jessica Feeley. I text, email her a lot for help, advice, and support. I’ve been on local news and TV and National Geographic. That story keeps promoting awareness on youtube. It has almost 3 milion hits and that’s how I met my girlfriend she commented on it and i commented back. I’d have to think that the world knows more about dystonia because of me and also with the help of my agent, Mike Delise, who is a life-long friend and supporter.