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.

Friday, May 5, 2017

Botox: Round III

So I am into day 10 after receiving my third round of Botox. This last time was rough for me. I ended up getting sick (a terrible head/chest cold) on top of the usual flu-like side effects from the Botox. I felt so weak and drained. 

The first few nights I woke up soaked in sweat and my appetite was low. I also had cold chills and felt feverish. I pretty much laid on the sofa for a week and tried to rest as much as possible. After 8 days I finally felt like I was getting some of my energy back. My pain has gone down a few points. On a scale of 1-10 my pain was a 9 before Botox and now fluctuates between a 7-8. I still have the pulling and tight muscles in my neck. It is just less intense. What is most bothersome is the disorientation. I feel like I had several margaritas (with the cheap tequila) and my head is a bowling ball floating on a pin. 

 I keep a daily journal of my symptoms and and pain level so that I can refer to my last injections and see what is different and what is the same. 

Here are the links to my journals if this interests you. 

January 2017

February 2017

March 2017

April 2017